If you have followed our journey, even the littlest bit, you know that our son, John, is severely developmentally delayed. This was not something we knew would happen when he was born. This was not something we knew would happen when he was 6 months old. This was not even something we knew would happen when he was 1 year old. But some time after his 1st birthday, we began to realize this is what we had in store for us. John would never catch up with other kids his age. I don't think for a long time we even realized how severe it would be, but we did finally realize that he would not develop at the same rate other kids his age would.
One of the areas John is delayed is his oral motor skills. You wouldn't know it by looking at him now, but John was considered a "poor feeder" as a baby. And I guess as far as oral motor skills go, he still is a "poor feeder". He eats well these days, but not the way he is supposed to eat. John cannot chew food. He has to eat food that we puree for him. Now he can chow down on some pureed food, but he just cannot chew it. He has made strides in his oral motor skills as far as being able to appropriately move his tongue around in his mouth, but he cannot make the cognitive connection it takes that when food goes into his mouth, it needs to be chewed. His first instinct is to swallow. This habit is further reinforced by the fact that he eats pureed food. So it's kind of a catch 22 he's in.
Have you ever thought about all of the things you have to do with your mouth in order to eat and drink? Probably not. It's always just been as automatic as breathing for most of us. But if you break it all down, it may be one of the most difficult things to learn. And unless you have ever watched someone struggle to learn how to do it, you probably didn't know how complicated it is.
The other thing John has never been able to do is drink from anything other than a bottle. And I can remember a time when he couldn't even do that. Most babies are born and within a few hours, figure out how to suck for nutrition. Some may even take a little longer than that, but most children figure it out pretty quickly. It's a natural instinct that they are born with. John wasn't born with that instinct. He literally had to start from the beginning.
When he was in his little incubator in the NICU, the Occupational Therapist would come in and work with him. She would put a glove on her hand, and take her pinky finger and just put the tip of it in his mouth. Almost immediately, his heart rate and oxygen would drop and she'd have to remove her finger. She did this for several days before he finally could tolerate having her finger there. Then she focused on trying to provoke his suck reflex. This took some time, but again, she was just using her pinky finger. He eventually got to where he could suck on her finger and he even used a pacifier a little. But he couldn't keep it in his mouth. We would have to hold it for him. The next step was to get him to tolerate having any liquid in his mouth. She would use a syringe and put just a tiny drop of liquid in his mouth. Of course now he has to figure out that it has to be swallowed. When he was able to tolerate liquids, we started trying to use a nipple from a bottle. He was not good with this at all. His suck reflex just wasn't strong. So they introduced this special bottle to him. It's called a haberman and this is a bottle that is typically used for kids with cleft pallets. It does not require him to suck. Instead he can bite down on the nipple and the liquid would come out. He used this bottle for a while. But he still was only able to drink a tiny amount before he would tire out. I can still remember the day he drank a whole ounce. I was so excited that I called my whole family to tell them.
By the time John came home from the hospital at 3 months, he was still drinking from the haberman and he was tolerating about 3 ounces at a time. Around 6 months old, I noticed he was not drinking 3 ounces any more. He was tiring out much quicker and we would have to give him the rest through his feeding tube. Around the same time, he was admitted to the hospital because of his sleep apnea. While at the hospital, we went to give him a bottle. We decided to use a regular nipple, but instead of grabbing a regular one, we accidentally grabbed a NUK nipple. This is more of a flat shape instead of round. Suddenly he drank all of his milk. So the next time we used the same kind and he did it again. We went home and replaced all of his regular nipples with NUK ones. He started doing really well.
Fast forward 8 years and John is still drinking all of his fluids from a bottle with a NUK nipple. We have worked with OT's for years trying to get him to use something else. We have bought just about every kind of cup on the market, thinking this would be the one he could use. Sippy cups never worked because he would just bite on the spout. We tried using just an open cup, but it was really hard to control the flow and he couldn't handle large amounts of liquid in his mouth at a time. We always kind of felt like the straw was going to be his best option, but again, biting the straw was an issue.
It is not convenient for a kid to drink from a bottle. He is very particular about where he drinks and what position he's in and who gives him a bottle. When we go out somewhere, we have to time our outings to where we can be home before his next bottle. And if we go to a restaurant, he can eat plenty, but he gets very little liquid in his mouth until we can get him home and give him a bottle.
For a while, his therapist has been able to get him to suck on a straw occasionally, but never with much consistency. And when I would try at home, he would just bite on it. It was really frustrating. But a few weeks ago, I noticed by accident that he got a couple of good sucks on a straw when I was working with him at home. So I began working with it pretty hard. He started getting better and better. Ladies and Gentlemen, I am very proud to announce that after 8 1/2 years and many years of therapy, we now have a straw drinker. It has finally clicked for this boy and he is now able to eat all of his food and drink all of his milk in one sitting. I don't even have to give him any cues any more. I just put the straw in his mouth and he knows what to do with it. It is simply amazing to watch. If you have never watched someone struggle with this, then you can't truly appreciate what a huge milestone it is. But my husband used a pretty good analogy earlier that might help you understand.
This is what he said:
Over the weekend at JT's baseball game his team was down by 3 runs with bases loaded and 2 outs. The coach called in John to bat and he hit a GRAND SLAM!!! His team went on to win 4-3. John was voted MVP of the game.
Now obviously that didn't actually happen, but that is exactly how exciting it is for us. We are such proud parents. This little boy never ceases to amaze us. He just keep going and working and he never gives up. Not ever. He is absolutely the definition of persistence.
Monday, February 17, 2014
Wednesday, February 12, 2014
More Special Knight News
Just a brief update on fundraising for Emma's Special Knight Project. Emma's mom, Heather, spoke with the principal of our school about raising funds. Basically, each school determines the amount of fundraisers they can have during a given school year. They don't want to constantly bombard the parents with more and more fundraisers. I understand this, of course, as a parent. Unfortunately, our school already has all of it's allotted fundraisers accounted for, so we are unable to raise any more money as a school. However we are able to continue to raise money privately. So that is what we are doing.
Heather also spoke with a lady from Be an Angel last week and she seems very eager to help us. Hopefully that will get us to where we need to be.
The good news is that we have already raised over $5,000. I am blown away by that amount and by the generosity of everyone who has supported us. You all will never truly know how much it means to us. Tommy, John Thomas and I want to say Thank you, Thank you from the bottom of our hearts. And I know that Heather and Emma echo that sentiment.
Because we cannot fundraise at school, it is so very important that we continue to get the word out. The wider we share this project, the better chance we have to meet our goal. When you go to the link, Heather has added some updates and there is even a picture in the gallery of the structure we are trying to purchase. I think it's a great picture of how much fun it can be. And just in case that picture isn't enough, here is a video of a group of kids enjoying their time on it.
This project means so much to John, Emma and the rest of the Special Buddies at Shafer. I cannot even describe the connection each of the buddies have made. So to be able to do something so much fun like this together, would be awesome. And here is the cool thing. We have 19 life skills kids and each kid has 2 buddies. So that is about 57 total kids that are involved in the program. However, there are even more kids that would have loved to be a Special Buddy, but we just didn't have the space for them. So having playground equipment they can all play on together is a way for those other kids to spend time with our life skills kids and will help bring the entire school even closer together.
Thank you again for your support, and please help us to spread the word far and wide.
http://www.youcaring.com/other/emma-s-special-knight-project/105598
Heather also spoke with a lady from Be an Angel last week and she seems very eager to help us. Hopefully that will get us to where we need to be.
The good news is that we have already raised over $5,000. I am blown away by that amount and by the generosity of everyone who has supported us. You all will never truly know how much it means to us. Tommy, John Thomas and I want to say Thank you, Thank you from the bottom of our hearts. And I know that Heather and Emma echo that sentiment.
Because we cannot fundraise at school, it is so very important that we continue to get the word out. The wider we share this project, the better chance we have to meet our goal. When you go to the link, Heather has added some updates and there is even a picture in the gallery of the structure we are trying to purchase. I think it's a great picture of how much fun it can be. And just in case that picture isn't enough, here is a video of a group of kids enjoying their time on it.
This project means so much to John, Emma and the rest of the Special Buddies at Shafer. I cannot even describe the connection each of the buddies have made. So to be able to do something so much fun like this together, would be awesome. And here is the cool thing. We have 19 life skills kids and each kid has 2 buddies. So that is about 57 total kids that are involved in the program. However, there are even more kids that would have loved to be a Special Buddy, but we just didn't have the space for them. So having playground equipment they can all play on together is a way for those other kids to spend time with our life skills kids and will help bring the entire school even closer together.
Thank you again for your support, and please help us to spread the word far and wide.
http://www.youcaring.com/other/emma-s-special-knight-project/105598
Friday, February 7, 2014
Special Knight Update
I wanted to give you all an update on Emma's Special Knight Project. The good news is that since posting her fundraising page on Facebook just 5 days ago, she has raised $900. That's incredible!!!! Emma and her mom as well as Tommy and I are extremely thankful to those of you who have graciously given money to help us get wheelchair accessible playground equipment for our school. You will never know how much your generosity has meant to all of us.
On Wednesday, I spoke with a sales rep for a company that sells this equipment. Now granted, this is just one bid, but it was a lot more than I was expecting. The price of just the structure alone is $20,000. And then we have to add the cost of shipping, and installation as well as whatever kind of safety surface we have to put around the equipment. So we are looking at a minimum of $25,000 to purchase and install this structure. That means, we need a lot more help.
Emma's mom and I plan to meet with our principal soon to discuss with her some possible fundraising ideas that we can do at school. Also, Ms. Lindner spoke with a lady yesterday from an organization called Be An Angel. She said the lady was extremely helpful and she wants to help us. She has to present to the board of course, and it could take 30 days to get an answer, since the board only meets once a month on this type of thing. But if they approve, they will be willing to help us fundraise, and possibly donate some of the money to us. We are excited for this possibility. We are both itching to get going on whatever fundraising project we can. We want to see this equipment on our playground, if not by the end of school this year, then by the start of school next year.
I have one last thing to ask of you all. If you don't mind, please copy the below link and post it on your Facebook or Twitter page. You can even go to the link and use the Facebook or Twitter button to share directly from there. We have raised $900 in 5 days just from sharing on Facebook. The more people that know, the more money we will be able to raise. Thanks to everyone who has supported us. These kids deserve to have a place to play just like everyone else.
http://www.youcaring.com/other/emma-s-special-knight-project/105598
On Wednesday, I spoke with a sales rep for a company that sells this equipment. Now granted, this is just one bid, but it was a lot more than I was expecting. The price of just the structure alone is $20,000. And then we have to add the cost of shipping, and installation as well as whatever kind of safety surface we have to put around the equipment. So we are looking at a minimum of $25,000 to purchase and install this structure. That means, we need a lot more help.
Emma's mom and I plan to meet with our principal soon to discuss with her some possible fundraising ideas that we can do at school. Also, Ms. Lindner spoke with a lady yesterday from an organization called Be An Angel. She said the lady was extremely helpful and she wants to help us. She has to present to the board of course, and it could take 30 days to get an answer, since the board only meets once a month on this type of thing. But if they approve, they will be willing to help us fundraise, and possibly donate some of the money to us. We are excited for this possibility. We are both itching to get going on whatever fundraising project we can. We want to see this equipment on our playground, if not by the end of school this year, then by the start of school next year.
I have one last thing to ask of you all. If you don't mind, please copy the below link and post it on your Facebook or Twitter page. You can even go to the link and use the Facebook or Twitter button to share directly from there. We have raised $900 in 5 days just from sharing on Facebook. The more people that know, the more money we will be able to raise. Thanks to everyone who has supported us. These kids deserve to have a place to play just like everyone else.
http://www.youcaring.com/other/emma-s-special-knight-project/105598
Monday, February 3, 2014
Special Knight Project
It's been a while since I have posted anything. There are many things I could update you on, but today I want to focus on a special project that is very near to my heart. Here is a little background on how this project came to be.
You may remember a blog I wrote a while back about a little girl we met while eating out with friends. If you don't, let me refresh your memory. While having dinner at one of our local favorite Mexican food joints one night, a young girl approached our table and began talking to John. It was clear that she knew John. Her mom then walked up to introduce herself. It turned out that the girl, Emma, was a student at Shafer Elementary and was in John's 2nd grade class. Her mom then told us a story that melted all of our hearts. The school was having a contest for someone to draw a picture of a Knight (the school's mascot) and the winning picture would be on the cover of the year book. Emma came home and told her mom that she thinks sometimes Knights can be in wheelchairs so that is what she drew. She submitted her picture of a Knight in a wheelchair and she titled her drawing "John". Her picture didn't make the cover, but it did make it inside of the year book. So I mentioned to Emma that when the new school year started, she should join Special Buddies.
Special Buddies is a program that pairs special needs students with typically developing students as buddies. The program is aimed to help students celebrate everyone's differences and to teach students that just because they are different on the outside, they are all still the same on the inside.
Emma joined Special Buddies this year and she is one of John's buddies. But that little girl was just beginning to impress me with her very kind and generous heart.
As the Special Buddies Parent Liaison at Fred and Patti Shafer Elementary School in Katy, Texas, I threw out the idea to our sponsor that we should try and get a wheel chair swing for our playground. It would be nice to have a piece of equipment that our students in wheelchairs could enjoy. You see, at Shafer, we have 19 life skills students, and 5 of those students are in wheelchairs. That means that 5 of those students go out to recess with their class every day and have to sit on the sidelines and watch their friends play because there is no wheelchair accessible equipment for them. So in my first contact with the Special Buddies parents, I outlined the events we were planning for the year and some special projects we wanted to work towards. One of those projects was the wheelchair swing. I soon heard from Emma's mom that Emma was taking it upon herself to get some inclusive equipment installed on our playground. She also was taking the initiative to raise funds for this. If you have ever priced anything that is labeled "special needs" then you know just how expensive these things can be. So it's going to be no small feat to raise the amount of funds needed not only to purchase the equipment, but also to pay for the installation.
Since this project started, we have decided instead of just a wheelchair swing, we wanted to get something called a Sway Fun Glider. This is what it looks like:
As you can see, it is a large structure that would be inclusive for kids of all abilities. You could actually fit two wheelchairs on the structure along with other kids sitting on the benches. And you can have more kids standing around the outside helping to make it rock. We don't have an exact price on this equipment, but our estimate is that it will cost between $10,000 and $20,000 for the equipment and the installation. As of today, Emma, on her own, has raised almost $3000 towards this project. Also on Emma's agenda is to attend a school board meeting and try to encourage the board to install inclusive playground equipment at all new campuses. What an amazing young girl she is. Like I said, she has a very kind and generous heart.
If you feel so inclined, you can help Emma reach her goal so that all of her friends at school can enjoy recess. As it is now, the kids that are in wheelchairs can only sit on the sidelines and watch the other kids play. They don't get to join in on the fun with them. This is not okay with Emma she wants to change this. To donate to Emma's Special Knight Project, visit the following link:
www.youcaring.com/emmacares
The link includes details of the fund raiser as well as a cute picture of John and his two buddies, Emma and Charlie. If you are unable to contribute to this fund, then I ask that you pass along our information to any of your friends whom you think might be able to help. You can share our link on Twitter, Facebook or by email. It would be great to see the faces of the kids as they get to enjoy this equipment and participate in recess for the first time.
You may remember a blog I wrote a while back about a little girl we met while eating out with friends. If you don't, let me refresh your memory. While having dinner at one of our local favorite Mexican food joints one night, a young girl approached our table and began talking to John. It was clear that she knew John. Her mom then walked up to introduce herself. It turned out that the girl, Emma, was a student at Shafer Elementary and was in John's 2nd grade class. Her mom then told us a story that melted all of our hearts. The school was having a contest for someone to draw a picture of a Knight (the school's mascot) and the winning picture would be on the cover of the year book. Emma came home and told her mom that she thinks sometimes Knights can be in wheelchairs so that is what she drew. She submitted her picture of a Knight in a wheelchair and she titled her drawing "John". Her picture didn't make the cover, but it did make it inside of the year book. So I mentioned to Emma that when the new school year started, she should join Special Buddies.
Special Buddies is a program that pairs special needs students with typically developing students as buddies. The program is aimed to help students celebrate everyone's differences and to teach students that just because they are different on the outside, they are all still the same on the inside.
Emma joined Special Buddies this year and she is one of John's buddies. But that little girl was just beginning to impress me with her very kind and generous heart.
As the Special Buddies Parent Liaison at Fred and Patti Shafer Elementary School in Katy, Texas, I threw out the idea to our sponsor that we should try and get a wheel chair swing for our playground. It would be nice to have a piece of equipment that our students in wheelchairs could enjoy. You see, at Shafer, we have 19 life skills students, and 5 of those students are in wheelchairs. That means that 5 of those students go out to recess with their class every day and have to sit on the sidelines and watch their friends play because there is no wheelchair accessible equipment for them. So in my first contact with the Special Buddies parents, I outlined the events we were planning for the year and some special projects we wanted to work towards. One of those projects was the wheelchair swing. I soon heard from Emma's mom that Emma was taking it upon herself to get some inclusive equipment installed on our playground. She also was taking the initiative to raise funds for this. If you have ever priced anything that is labeled "special needs" then you know just how expensive these things can be. So it's going to be no small feat to raise the amount of funds needed not only to purchase the equipment, but also to pay for the installation.
Since this project started, we have decided instead of just a wheelchair swing, we wanted to get something called a Sway Fun Glider. This is what it looks like:
As you can see, it is a large structure that would be inclusive for kids of all abilities. You could actually fit two wheelchairs on the structure along with other kids sitting on the benches. And you can have more kids standing around the outside helping to make it rock. We don't have an exact price on this equipment, but our estimate is that it will cost between $10,000 and $20,000 for the equipment and the installation. As of today, Emma, on her own, has raised almost $3000 towards this project. Also on Emma's agenda is to attend a school board meeting and try to encourage the board to install inclusive playground equipment at all new campuses. What an amazing young girl she is. Like I said, she has a very kind and generous heart.
If you feel so inclined, you can help Emma reach her goal so that all of her friends at school can enjoy recess. As it is now, the kids that are in wheelchairs can only sit on the sidelines and watch the other kids play. They don't get to join in on the fun with them. This is not okay with Emma she wants to change this. To donate to Emma's Special Knight Project, visit the following link:
www.youcaring.com/emmacares
The link includes details of the fund raiser as well as a cute picture of John and his two buddies, Emma and Charlie. If you are unable to contribute to this fund, then I ask that you pass along our information to any of your friends whom you think might be able to help. You can share our link on Twitter, Facebook or by email. It would be great to see the faces of the kids as they get to enjoy this equipment and participate in recess for the first time.
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