Thank you all for visiting and checking up on our PTLS kids! Due to the overwhelming response from other parents wating to add their children to the blog we have now moved to a new location!! (Google Blogger won't let you add more than 10 stand alone pages..) Anyway here is the new address: http://ptlskids.wordpress.com/
I hope you continue to read up on our children! Thanks for being there for us :) LOVE SHELLY
Tuesday, November 23, 2010
Monday, October 25, 2010
Pumpkins for my Pumpkin!
We also found some really cute pumpkins. One really little one that looked like a mini watermelon, I picked it for him and when he saw it he just laughed and threw it. It was pretty hard to get a picture of him holding it because all he wanted to do was throw it!
I have to say this is one of my favorite times of the year with him. He just seems to love Halloween. Dressing up, all of the candy of course and especially the pumpkins. We were at the store together just the other day and he saw the pumpkins, ran over to them as fast as he could, grabbed one and put it in the cart, then ran off for another. It was just the most adorable thing to see.
Sunday, September 5, 2010
Video Q&A with Moms of PTLS
This video was from Christian's 23rd birthday, how wonderful it is that these moms put the time and effort into providing this to all of us that could not make it. Thanks Julie :) Enjoy!
Q&A Part 1 of 2:
Q&A Part 2 of 2:
Tuesday, August 31, 2010
Jamison's Therapy:
Many of you have asked about what Jamison receives for therapy so I wanted to outline that for you:
Jamison has 22 hours of Intensive Behavioral Intervention (IBI Therapy or some states call it ABA) a week, he does this Mon-Thurs all year long. The state currently offers this for 3 years in private institutions like Jamison is at but offers it through public schools until 21 years in Idaho.
He has 30 minutes a week of speech therapy and also 45 minutes of physical therapy a week.
Speech Therapy:
Jamison is currently working on 1 step directions with his speech therapist as well as his sounds. He is averaging about 5 out of 6 one step directions right now according to his speech therapist which I had the pleasure of watching today. She stated that he sometimes has a hard time following directions when he gets caught up playing with his toys, and he needs to be redirected. She uses props to help him with his 1 step directions, including a baby and a ball. She will tell him to "feed the baby" which he will do with a bottle and also "throw the ball" which he seems to really enjoy. He tends to do better without me there as a distraction.
We have noticed that Jamison often responds well to watching himself making sounds on video, and will start imitating them when otherwise not making sounds when prompted. He has an iPod we have at the school so we are going to load some videos of him babbling and saying his new word to help motivate him to make more sounds. He also is going to start using a mirror during speech and IBI therapy to hopefully help motivate him with his sounds. He used to really enjoy watching himself in the mirror while moving his mouth so I'm hoping when we reintroduce it he will enjoy it again!
IBI Therapy:
I can't say enough about his IBI Therapy, and I know most of that has to do with his wonderful therapists! We have been going to a private Montessori school for about 2 years now and the progress he has made has been phenomenal! He has improved his eye contact SO much as well as interacting with others. He is even to the point where he is walking up to strangers and wanting to have them chase him or follow him around, which is a new concern that we will be addressing, this little kid wants to just play with everyone (especially adults).
He follows a routine everyday:
9:00-9:30 Circle time with the class (the class has mostly typical peers)
9:30-10:00 Receptive Labeling (asking him to "point to the __" he uses pictures of animals currently)
10:00-10:30 Snack time with the class (brushes teeth after and potty time)
10:30-11:00 Recess time (he enjoys peddling a bike around the track and also going down slide)
11:00-11:30 IBI Therapy in his room
11:30-12:00 Work in classroom
12:00-12:30 Lunch time with the class
12:30-1:30 IBI Therapy in his room
1:30-2:00 Snack time with the class (brushes teeth after and potty time)
2:00-3:00 Community activites (going to the library, store or park usually)
Today I sat in on his IBI Therapy and watched him during his programs. He is "taking turns" with his therapist playing a game of Connect Four. He will take his turn putting his chip in and then wait for his therapist to take her turn putting her chip in. After they have filled the game they will put the chips back, red chips on one side and black chips on the other. He does this often without too much help. Even when it appeared he was not paying attention, he still waited for his therapist to take her turn before attempting to take his own. After they are done with activities Jamison will usually put all activities away when prompted.
Typically Jamison will alternate doing "work" with something more fun. Today he played with some homemade "gak" or gooey putty that he seems to really enjoy. His therapist said typically he will pull handfuls out of the container until it is empty and then want to take handfuls and fill it back up. Today he was being silly and grabbing clumps and smashing it back onto itself.
After he put his gak away he went back to working. He started his receptive labeling. His therapist had two pictures in front of him, a dog and a chicken. She would tell him "point to the dog" and he would place his hand on the dog. Then she would switch them around and ask again for him to "point to the dog" which he did effortlessly :) He receives "reinforcements" of some sort of snack of his choosing, today it was chocolate covered raisins which he gets after he does something correctly. According to his therapist he gets his receptive labeling of the dog correct about 80% of the time.
After we were done with this we did some community time. One of his goals I have is working on him holding on to the cart or standing next to me when we are out shopping. He does this very well. He typically only gets distracted when we are near the hot wheels isle :) He is very good in the community and rarely ever has any issues when we are out shopping.
The only time I have noticed him have any issues is if we try to go into clothing stores playing loud music or that smell strong of perfumes like Hollister, Abercrombie or Buckle. I think the music and smell are too intense for him and I typically avoid those stores as much as possible when I'm shopping with him. I have also noticed that he very much dislikes going into office supply stores, mostly Office Max, not sure why.. probably because they are boring :)
Physical Therapy:
Jamison has been making so much progress in physical therapy.
Currently he is working on his jumping skills, which have greatly improved this year, I think in part because we have an in-ground trampoline in the back yard so he can get really bouncing on that more than the one at the physical therapy office that is more like an exercise trampoline with little bounce. He used to really dislike going on the trampoline and now it is a preferred activity for him. He is also working on jumping off a platform to the ground. He usually just jumps up and down on it, but has been making much progress pushing himself forward while just holding onto one hand of the therapist.
He is also working on going up and down the stairs alternating feet. He currently walks down the stars placing both feet on each stair before going to the next one, but will alternate feet going up the whole way. He also is working on holding on to the railing with one hand up and down the stairs, currently he tries to use both hands to hold on while going up or down which makes it rather difficult for him to feel comfortable alternating steps because he is more unstable that way.
He is also working on walking on a straight line or balance beam for I believe 6 feet. He often will get 2-3 feet but then not pay attention and stray off the line or beam.
One thing he has almost mastered during physical therapy is hitting a ball with a bat off of a tee. He was getting about 80% last week at therapy and he is really enjoying this activity.
Home Activities:
I know there is so much I am missing about his therapy that he is doing, but I wanted to get a little bit of it out there so you can see what he is doing at school.
At home we try to have more play time but I do incorporate many signs that he does at school as well as signs that I want him to learn like "I love you"
We are also working on toileting at home as well. We ask him to sign "toilet or potty" and then we take him to the bathroom. We unbutton his pants and unzip them for him but he pulls them down on his own and will throw his diaper away and he sits on the potty now without crying while we sing the "ABCs" and sign them to him. He will often attempt to sign the letters or hum to the song. Afterwards we put a new diaper on and he will pull his pants up. Then he signs "wash hands" and we wash hands. I have noticed that he seems to do better with toileting now that we have a routine and aren't just sticking him on the potty and expecting things to happen. He still has not gone on the potty (well he has but only when we knew something was going to happen and rushed him in there) but he is making progress just tolerating sitting on it which I am very happy about.
He has a routine at home but it is somewhat lax on the weekends when we are just doing family stuff, but typically we always have the same routine before bed and keep the same bed time each night and he does very well with this.
I hope some of this information has helped and you get a better idea of what therapies Jamison is doing! If you have any questions please feel free to ask!
Jamison has 22 hours of Intensive Behavioral Intervention (IBI Therapy or some states call it ABA) a week, he does this Mon-Thurs all year long. The state currently offers this for 3 years in private institutions like Jamison is at but offers it through public schools until 21 years in Idaho.
He has 30 minutes a week of speech therapy and also 45 minutes of physical therapy a week.
Speech Therapy:
Jamison is currently working on 1 step directions with his speech therapist as well as his sounds. He is averaging about 5 out of 6 one step directions right now according to his speech therapist which I had the pleasure of watching today. She stated that he sometimes has a hard time following directions when he gets caught up playing with his toys, and he needs to be redirected. She uses props to help him with his 1 step directions, including a baby and a ball. She will tell him to "feed the baby" which he will do with a bottle and also "throw the ball" which he seems to really enjoy. He tends to do better without me there as a distraction.
We have noticed that Jamison often responds well to watching himself making sounds on video, and will start imitating them when otherwise not making sounds when prompted. He has an iPod we have at the school so we are going to load some videos of him babbling and saying his new word to help motivate him to make more sounds. He also is going to start using a mirror during speech and IBI therapy to hopefully help motivate him with his sounds. He used to really enjoy watching himself in the mirror while moving his mouth so I'm hoping when we reintroduce it he will enjoy it again!
IBI Therapy:
I can't say enough about his IBI Therapy, and I know most of that has to do with his wonderful therapists! We have been going to a private Montessori school for about 2 years now and the progress he has made has been phenomenal! He has improved his eye contact SO much as well as interacting with others. He is even to the point where he is walking up to strangers and wanting to have them chase him or follow him around, which is a new concern that we will be addressing, this little kid wants to just play with everyone (especially adults).
He follows a routine everyday:
9:00-9:30 Circle time with the class (the class has mostly typical peers)
9:30-10:00 Receptive Labeling (asking him to "point to the __" he uses pictures of animals currently)
10:00-10:30 Snack time with the class (brushes teeth after and potty time)
10:30-11:00 Recess time (he enjoys peddling a bike around the track and also going down slide)
11:00-11:30 IBI Therapy in his room
11:30-12:00 Work in classroom
12:00-12:30 Lunch time with the class
12:30-1:30 IBI Therapy in his room
1:30-2:00 Snack time with the class (brushes teeth after and potty time)
2:00-3:00 Community activites (going to the library, store or park usually)
Today I sat in on his IBI Therapy and watched him during his programs. He is "taking turns" with his therapist playing a game of Connect Four. He will take his turn putting his chip in and then wait for his therapist to take her turn putting her chip in. After they have filled the game they will put the chips back, red chips on one side and black chips on the other. He does this often without too much help. Even when it appeared he was not paying attention, he still waited for his therapist to take her turn before attempting to take his own. After they are done with activities Jamison will usually put all activities away when prompted.
Typically Jamison will alternate doing "work" with something more fun. Today he played with some homemade "gak" or gooey putty that he seems to really enjoy. His therapist said typically he will pull handfuls out of the container until it is empty and then want to take handfuls and fill it back up. Today he was being silly and grabbing clumps and smashing it back onto itself.
After he put his gak away he went back to working. He started his receptive labeling. His therapist had two pictures in front of him, a dog and a chicken. She would tell him "point to the dog" and he would place his hand on the dog. Then she would switch them around and ask again for him to "point to the dog" which he did effortlessly :) He receives "reinforcements" of some sort of snack of his choosing, today it was chocolate covered raisins which he gets after he does something correctly. According to his therapist he gets his receptive labeling of the dog correct about 80% of the time.
After we were done with this we did some community time. One of his goals I have is working on him holding on to the cart or standing next to me when we are out shopping. He does this very well. He typically only gets distracted when we are near the hot wheels isle :) He is very good in the community and rarely ever has any issues when we are out shopping.
The only time I have noticed him have any issues is if we try to go into clothing stores playing loud music or that smell strong of perfumes like Hollister, Abercrombie or Buckle. I think the music and smell are too intense for him and I typically avoid those stores as much as possible when I'm shopping with him. I have also noticed that he very much dislikes going into office supply stores, mostly Office Max, not sure why.. probably because they are boring :)
Physical Therapy:
Jamison has been making so much progress in physical therapy.
Currently he is working on his jumping skills, which have greatly improved this year, I think in part because we have an in-ground trampoline in the back yard so he can get really bouncing on that more than the one at the physical therapy office that is more like an exercise trampoline with little bounce. He used to really dislike going on the trampoline and now it is a preferred activity for him. He is also working on jumping off a platform to the ground. He usually just jumps up and down on it, but has been making much progress pushing himself forward while just holding onto one hand of the therapist.
He is also working on going up and down the stairs alternating feet. He currently walks down the stars placing both feet on each stair before going to the next one, but will alternate feet going up the whole way. He also is working on holding on to the railing with one hand up and down the stairs, currently he tries to use both hands to hold on while going up or down which makes it rather difficult for him to feel comfortable alternating steps because he is more unstable that way.
He is also working on walking on a straight line or balance beam for I believe 6 feet. He often will get 2-3 feet but then not pay attention and stray off the line or beam.
One thing he has almost mastered during physical therapy is hitting a ball with a bat off of a tee. He was getting about 80% last week at therapy and he is really enjoying this activity.
Home Activities:
I know there is so much I am missing about his therapy that he is doing, but I wanted to get a little bit of it out there so you can see what he is doing at school.
At home we try to have more play time but I do incorporate many signs that he does at school as well as signs that I want him to learn like "I love you"
We are also working on toileting at home as well. We ask him to sign "toilet or potty" and then we take him to the bathroom. We unbutton his pants and unzip them for him but he pulls them down on his own and will throw his diaper away and he sits on the potty now without crying while we sing the "ABCs" and sign them to him. He will often attempt to sign the letters or hum to the song. Afterwards we put a new diaper on and he will pull his pants up. Then he signs "wash hands" and we wash hands. I have noticed that he seems to do better with toileting now that we have a routine and aren't just sticking him on the potty and expecting things to happen. He still has not gone on the potty (well he has but only when we knew something was going to happen and rushed him in there) but he is making progress just tolerating sitting on it which I am very happy about.
He has a routine at home but it is somewhat lax on the weekends when we are just doing family stuff, but typically we always have the same routine before bed and keep the same bed time each night and he does very well with this.
I hope some of this information has helped and you get a better idea of what therapies Jamison is doing! If you have any questions please feel free to ask!
Monday, August 30, 2010
Blueberries and Strawberries and Raspberries... OH MY! Oh yeah... Sleep Apnea too.
Jamison is obsessed with fruit. I swear he would eat that and only that if I actually let him.. I wouldn't be surprised if he had a little strawberry plant growing inside him right now! Check out my little man picking his own raspberries, but no.. he doesn't save them for later haha
Also, I did want to inform you all that Jamison was just diagnosed with sleep apnea today. The doctors are recommending him to have his tonsils and adenoids removed to help with this. It is something I am not taking lightly, I am having a consultation with an ENT doctor here soon to go over the possible benefits of this and getting several opinions before moving forward. From what I have gathered from other parents who have done this as well as his speech therapist, he could benefit greatly by having them removed not only to help his sleep apnea but also to possibly help his speech. I will keep you all updated on what happens!
Also, I did want to inform you all that Jamison was just diagnosed with sleep apnea today. The doctors are recommending him to have his tonsils and adenoids removed to help with this. It is something I am not taking lightly, I am having a consultation with an ENT doctor here soon to go over the possible benefits of this and getting several opinions before moving forward. From what I have gathered from other parents who have done this as well as his speech therapist, he could benefit greatly by having them removed not only to help his sleep apnea but also to possibly help his speech. I will keep you all updated on what happens!
Saturday, August 28, 2010
Jamison's Words...
Jamison has been doing so well with his signing... I just captured a video of some of the signs that he does.. we were just getting ready for bed and I thought it would be cute to post a video of him signing, too bad I couldn't even think of all of the words that he knows how to sign! That's a good thing though :) Please enjoy the video of J-Man signing. There is a word in there, his only word.. I'm sure you all remember what that is! It's a pretty big file so it may take a moment to play...
"Wait, he has special needs too?!" -Samantha Mears
We are so lucky to have had the opportunity to have met another PTLS Family!
The Mears Family.
 |
| Alex, Ryan, Samantha, Debbie, Shelly, Jamison & Justin |
I was happy to hear that Samantha had a lot of similarities to Jamison, and the most shocking one was when I asked if Samantha ever laughed at people fighting in movies (like kicking and punching) and it was a simultaneous "YEAH" from her whole family, it was pretty funny, because I thought Jamison was the only one...guess not!
Also, the most interesting thing to me personally was talking to her two wonderful brothers (Ryan 23 and Alex 12) about how they felt about having a sibling with special needs. You could tell just how much they cared for her and adored her, they talked about how they would tease her playfully when they were younger and you could just see her light up when they talked about it. Her oldest brother Ryan even commented on how when he meets a girl he will only date them if Samantha likes them and they get along well together. It made me feel so comforted that one day, when we do have another child that everything will be fine. That has been weighing very heavily on me lately and I was worried about how another child would feel growing up, so I was SO happy to see how much love and compassion her brothers had for her.
It was so cute, but about half way through lunch I had made some comment about Jamison having "special needs" and Samantha chimed in and said "wait, he has special needs too?!" It was the cutest thing ever watching her put it all together and her mom told her "yes, he's just like you" and Samantha just smiled and lit up and was so happy, in that moment I just felt so wonderful... she is such a special girl. She also said that "Jamison is so cute..." that was pretty adorable also.
Here is a cute picture of Samantha & Jamison together...
 | |||||
| Samantha & Jamison (08/28/2010) |
Tuesday, August 24, 2010
Interview with Christian Centeno:
Thanks Julie for sending this link for all to enjoy! You don't know how much I wish I could get into Jamison's head when he's humming and running around in circles for an hour!
A talk with Christian (Potocki-Lupski Syndrome) from Julie Smith-Centeno- Potocki-Lup on Vimeo.
A talk with Christian (Potocki-Lupski Syndrome) from Julie Smith-Centeno- Potocki-Lup on Vimeo.
Tuesday, August 17, 2010
PTLS Gathering Atlanta 2010
A big thanks to Julie Smith-Centeno, who put this beautiful collection of photos from the Atlanta gathering this year for Christian's 23rd birthday together into a wonderful video! Hope you enjoy it...
Potocki-Lupski Syndrome (duplication 17p11.2) from Julie Smith-Centeno on Vimeo.
Potocki-Lupski Syndrome (duplication 17p11.2) from Julie Smith-Centeno on Vimeo.
Tuesday, August 10, 2010
Jamison loving life, as always...
Things around here have been pretty amazing. Jamison has had so much fun learning to talk... unfortunately it has already gotten me into trouble as his favorite and only word to say is "gay" or at least it sounds like gay. He especially loves to yell it out when we're shopping, oh joy! A woman even came up to us when we were at Ace Hardware recently and told me that it was very offensive to her... hopefully he starts learning some more words quick! Regardless, he's having a blast saying his only word over and over again, and I'm loving every minute of it.
Here's a video of him loving life:
Jamison is also doing great in physical therapy, he's learning to do a little slide shuffle that is super cute! Hopefully I'll catch a video of him doing that really soon. He's jumping really well and also he's hitting a ball off a baseball tee with little assistance!
I'll post more about his IBI therapy soon...
Here's a video of him loving life:
Jamison is also doing great in physical therapy, he's learning to do a little slide shuffle that is super cute! Hopefully I'll catch a video of him doing that really soon. He's jumping really well and also he's hitting a ball off a baseball tee with little assistance!
I'll post more about his IBI therapy soon...
Tuesday, August 3, 2010
Camping - July 2010
We finally got to take our first camping trip a couple of weekends ago. Jamison loves camping, being able to run free in the outdoors! We had a great time... the best part was Jamison eating S'Mores for the first time! I do have to say he prefers the graham crackers with chocolate only!
I love being able to take Jamison out to do these types of things... YES, it is stressful, there are a lot more things that could happen as opposed to just lounging in your living room, but he deserves to get out there and have fun, even if I become "paranoid crazy mom" for a little bit! It's nice to have friends/family out there with us to get a little break from puppy guarding the lil man also!
I think my favorite part of the camping trip was meeting these young boys skateboarding right in front of our camp. They were having a blast and Jamison seemed really interested so we walked over and they even tried to teach him how to skateboard. He did stand on it for a bit, and they even tried to pull him around. It was hilarious, and Jamison will never be a skater, he prefers watching them, believe me!!
I love being able to take Jamison out to do these types of things... YES, it is stressful, there are a lot more things that could happen as opposed to just lounging in your living room, but he deserves to get out there and have fun, even if I become "paranoid crazy mom" for a little bit! It's nice to have friends/family out there with us to get a little break from puppy guarding the lil man also!
I think my favorite part of the camping trip was meeting these young boys skateboarding right in front of our camp. They were having a blast and Jamison seemed really interested so we walked over and they even tried to teach him how to skateboard. He did stand on it for a bit, and they even tried to pull him around. It was hilarious, and Jamison will never be a skater, he prefers watching them, believe me!!
Wednesday, July 7, 2010
Meeting Dan & Marian
My husband had to take a trip over to Seattle for work, and Jamison and I decided to go to get a little mini-vacation and meet up with Marian & Dan over there, another PTLS family. I have to say that meeting Dan was such a thrill for me. I never expected him to be the way he was... I don't know what I expected, but I was happily surprised when I got there. He was so funny, that is something that I really didn't expect. His humor was hilarious, and he was so sweet!
It really gave me a little jump start back up knowing that this potentially could be Jamison in a few short years... I never expect what life can be like in 5, 10 or 15 years.. I just hope, and meeting them gave me so much more hope than I could dream of! It was the best experience and I can't wait to see them again!
It really gave me a little jump start back up knowing that this potentially could be Jamison in a few short years... I never expect what life can be like in 5, 10 or 15 years.. I just hope, and meeting them gave me so much more hope than I could dream of! It was the best experience and I can't wait to see them again!
Sunday, June 6, 2010
Lights, Camera... SMILES!
Jamison has always been such a ham for the camera, and like always... we get some really beautiful pictures. These pictures were taken by Brady Campbell Photography at his school a month or so ago. I hope you enjoy them, and if you would like copies of any please let me know! Love, Shelly.
Friday, May 28, 2010
A Special Note to Gerald...
I am so happy that you found my blog. It's encouraging to hear about your son and want you to know that most parents who contact me have children between 3 weeks old and 5 years old. Christian was the oldest contact I had until I heard from you and I would love it if you could contact me by email so I could talk to you more about your journey with Brad. Please, please contact me on my email shellylynnjones@gmail.com or call 208-640-3542! I am excited to hear from you!! (and have SO many questions!)
-Shelly.
-Shelly.
Jamison sharing his journey...
I feel very fortunate to be able to share Jamison's journey with others, to encourage them and help them understand what might be in their future. Recently, I have been thinking about getting Jamison's therapists to write a little something to share their experience with Jamison over the years.
Also, I wanted to feature other children that I have met through my blog if their parents would like to so that others may hear their story and also have a way to contact them as well. I feel blessed to know all of you that contact me on my blog, believe me... it helps me just as much as it does you! Now I think it's time for me to expand this for others to be involved so we have a little community of support. I'm just one of many and I want us to all come together for each other!
If you are interested in sending me a story/picture/contact info to post to my blog please email me @ shellylynnjones@gmail.com and we can talk about what you might want to share and post!!
As always, I look forward to hearing from each and everyone of you and can't wait to see what all of our futures hold!
With Love,
J-Man's Momma ;)
Also, I wanted to feature other children that I have met through my blog if their parents would like to so that others may hear their story and also have a way to contact them as well. I feel blessed to know all of you that contact me on my blog, believe me... it helps me just as much as it does you! Now I think it's time for me to expand this for others to be involved so we have a little community of support. I'm just one of many and I want us to all come together for each other!
If you are interested in sending me a story/picture/contact info to post to my blog please email me @ shellylynnjones@gmail.com and we can talk about what you might want to share and post!!
As always, I look forward to hearing from each and everyone of you and can't wait to see what all of our futures hold!
With Love,
J-Man's Momma ;)
Wednesday, May 12, 2010
One, Two, Three... JUMP!
Jamison has finally mastered the art of JUMPING! It has been a long road, and with the help of our backyard trampoline and his amazing Physical Therapist he has FINALLY learned to jump! I even find him jumping now randomly throughout the day ;) I love it. He is getting better and better each day and I have an awesome video of him jumping. Unfortunately, I was unable to upload the video on here, but if you would like a copy please email me shellylynnjones@gmail.com and I will send it to you!
Sunday, April 4, 2010
Easter Monsters!
Jamison had so much fun coloring Easter eggs for the first time this year! He went crazy with the dye and it went everywhere, but there was no stopping his fun! We made little Easter monsters and Jamison couldn't stop laughing at them!
Thursday, April 1, 2010
The Results Are In...
Jamison has normal hearing for upto speech range. They still don't have the results back from the neurologist on the "high frequency" noises but seem to think that will be normal as well. Even if there was some loss within the high frequency range it would not be something that would require a hearing aid. YAY! Finally, a test Jamison totally passed with flying colors!! Now if we could just get this guy talking...
Thursday, March 18, 2010
Love, Happiness and ESPECIALLY Laughter!!
Of all of the children I know, Jamison is the happiest. In fact, he ALWAYS has been. Sure, he has his moments of frustration... he wants something now and can't wait the 20 seconds it takes to open the box! It's rare, but he will pout... however, to know Jamison is to know that happiness is contagious. He is full of joy and I can't imagine a world without his smile.
I consider myself to be one of the luckiest parents alive. Sure, I have a different story than most... sometimes people think I'm a little overprotective (well, most of the time really) but I just do what is right for my little man. He's like no other and that's what makes Jamison's journey so special!
I don't have much to say about progress at this point. He's 4, he's being more vocal with imitating sounds, but really no words have stuck. We will be having a hearing test done on the 31st and I will let you know more when I have that information. I think he's fine, he just chooses to ignore us ;). (Sometimes I wish I could do that!) He's loving his new room and our new house. School is going great, and I will be updating with information on his programs here in the next week or so. I think it's important for other parents to read the types of stuff he's doing in school so they can compare to what their children are getting and their progress.
One thing I really wanted to get across with this particular post is that raising a child with Potocki-Lupski Syndrome is "different". That's really the only word I can use to describe it! Sure, other parents with "typical" children have a lot of things easy, but I like to focus on what's not so easy for them. I have been blessed in comparison to some of the parents with "typical" children that I know!! I rarely ever have to deal with tantrums like a lot of parents I know that do on a day to day basis. When I go shopping, Jamison is like a little "shopping angel!" I could shop for a week straight and never have a problem with him. AWESOME! He loves to go camping and fishing and boating... it's so much fun.
Look... if I spent my whole life upset about my son's diagnosis, I would never have time to enjoy all of the wonderful beauty he has brought into my world. This diagnosis was really hard for me to understand at first, but after you come to terms with it, you still get to hold that beautiful child of yours... you still get to see their eyes light up when you get them their favorite toy or movie. You still get to hear their beautiful laughter, and that I think is the most wonderful thing about being a parent of PTLS. I see beauty in things that are a little bit "different!"
If you ever need someone to talk with or support dealing with a diagnosis for your child or other family member give me a call... I love to help (208) 640-3542. It's funny, but I have talked with so many people that took months to contact me because they were afraid they would bother me. Honestly, if I didn't want to help, I never would have published this blog. It's for friends, family and to give help and hope to others!
If you need a visual of Jamison's happiness... check out this video :)
I consider myself to be one of the luckiest parents alive. Sure, I have a different story than most... sometimes people think I'm a little overprotective (well, most of the time really) but I just do what is right for my little man. He's like no other and that's what makes Jamison's journey so special!
I don't have much to say about progress at this point. He's 4, he's being more vocal with imitating sounds, but really no words have stuck. We will be having a hearing test done on the 31st and I will let you know more when I have that information. I think he's fine, he just chooses to ignore us ;). (Sometimes I wish I could do that!) He's loving his new room and our new house. School is going great, and I will be updating with information on his programs here in the next week or so. I think it's important for other parents to read the types of stuff he's doing in school so they can compare to what their children are getting and their progress.
One thing I really wanted to get across with this particular post is that raising a child with Potocki-Lupski Syndrome is "different". That's really the only word I can use to describe it! Sure, other parents with "typical" children have a lot of things easy, but I like to focus on what's not so easy for them. I have been blessed in comparison to some of the parents with "typical" children that I know!! I rarely ever have to deal with tantrums like a lot of parents I know that do on a day to day basis. When I go shopping, Jamison is like a little "shopping angel!" I could shop for a week straight and never have a problem with him. AWESOME! He loves to go camping and fishing and boating... it's so much fun.
Look... if I spent my whole life upset about my son's diagnosis, I would never have time to enjoy all of the wonderful beauty he has brought into my world. This diagnosis was really hard for me to understand at first, but after you come to terms with it, you still get to hold that beautiful child of yours... you still get to see their eyes light up when you get them their favorite toy or movie. You still get to hear their beautiful laughter, and that I think is the most wonderful thing about being a parent of PTLS. I see beauty in things that are a little bit "different!"
If you ever need someone to talk with or support dealing with a diagnosis for your child or other family member give me a call... I love to help (208) 640-3542. It's funny, but I have talked with so many people that took months to contact me because they were afraid they would bother me. Honestly, if I didn't want to help, I never would have published this blog. It's for friends, family and to give help and hope to others!
If you need a visual of Jamison's happiness... check out this video :)
Friday, January 8, 2010
Can you say "Bike?"
Here is a video from Jamison's P.T today. This is the furthest he has ever gone on his bike. I'm so proud of my little man I just can't believe how far he's coming.
I guess it's been quite a bit since I've last updated my blog, and many exciting things have happened since... This week Jamison has SAID "No", "Go", "All Done" and Mama. That's right, SAID... but only once each and I can't seem to get him to do it again!! I'm going crazy, I just want him to spit it out! Hopefully the next time he does I'll capture a video of that to post.
Until then... enjoy this one.
Wednesday, November 11, 2009
Jamison's 4th Birthday & Halloween!
Jamison had a wonderful 4th Birthday! He had friends and family all come together to celebrate his big day. He didn't much enjoy the opening of the presents, just what was inside of them. Especially when it was a car! He received over 20 new cars to add to his collection, so as you can imagine, he found this to be a VERY good day!
He also had a great Halloween. He was a lion this year and had a blast running around in his costume. He went to visit family and friends around town to show off how cute he looked. Here are a couple pictures of my cute little lion!
He also had a great Halloween. He was a lion this year and had a blast running around in his costume. He went to visit family and friends around town to show off how cute he looked. Here are a couple pictures of my cute little lion!
Jamison loves to camp!
This year we got a new camper so that Jamison could enjoy going camping with us. He has is own big boy bed as well as all of his movies to make camping fun for our little guy. This year was his first time camping and he loved it! We went to Farragut State Park for a couple of nights and took him out for smores and hiking on the trails! Here are some pictures of him on his first camping adventure!
Tuesday, September 22, 2009
Itsey Bitsy Spider makes J-Man shout!
I hope you like this picture of Jamison taken a few days ago. This is Jamison's favorite spot on the playground. And I have to admit, he looks mighty cool in there too.Jamison just loves to sing along to the "Itsey Bitsy Spider" song. Well... it's not really singing, just his version. He especially loves the "...wipes the spider out!" part. Jamison has been doing so great in school. He's getting potty time every day so I'm keeping my fingers crossed that he will start to understand the potty!
Jamison is just loving being outside and has started wearing his sunglasses this year. It's been a long time coming, but now he never wants to take them off, even when it's dark out!
His 4th birthday is coming up the end of October and I just can't believe the progress he's made in the last year. I never would have imagined that he would have picked up the signing as well as he has. Infact, just today his therapist and I were commenting on how precise he is about his signs once he learns them. I have so many hopes for Jamison being able to talk, I know it's got to be coming. And when he does I'm sure he has so many funny things bottled up in there he'll keep us laughing for years ;).
Keep an eye out for Jamison's Birthday/Halloween pictures!! ROAR - He's a lion this year!
Wednesday, May 27, 2009
Jamison and his Godmother
Jamison and Teri got to meet for the first time this week. It was so wonderful to see her, and even more wonderful to see Jamison having such a wonderful time with her. Jamison doesn't usually take to anyone right away, sometimes he just never really does.
Jamison has become more and more willing to accept people, maybe not if they want to hold him but just toleration of new people has been increasing so much. But when Teri came to town, she wasn't going to let a little crying stop her! She grabbed Jamison and packed him around for our whole walk, and he LOVED IT!
Here's the pictures to prove it ;)
Jamison has become more and more willing to accept people, maybe not if they want to hold him but just toleration of new people has been increasing so much. But when Teri came to town, she wasn't going to let a little crying stop her! She grabbed Jamison and packed him around for our whole walk, and he LOVED IT!
Here's the pictures to prove it ;)
Jamison's Food Choices
Jamison has always had problems with eating, unless it is chocolate of course! Here are the new foods that he is choosing to eat:
- Peanut Butter & Jelly (YAY!)
- Jello
- Yogurt
- Pudding
- Blackberries
- Cheese Burger (once so far!)
- Oranges
- Oatmeal Cookies
- Applesauce
Jamison Signs, Sorts and other stuff!
Jamison still might not talk, but his signing has blown me away. Just this morning I got his progress report from school and some of his signs have been reported as "mastered"... WHAT?! I NEVER in a million years could have though he would MASTER any signs!! His progress has been nothing short of amazing!
When Jamison started school, just a few short months ago we were signing to him but he was not signing back. Now, I am pleased to report Jamison currently signs:
Jamison's imitation skills have improved SO much recently. He will copy you when you tell him to touch your head, nose and mouth. He also does that with me at home and will touch his leg and foot!
To anyone that says developmentally delayed children will do well with or without therapy, I say you haven't met Jamison yet! I could never have imagined he would be where he is today, and know without a doubt it is all because of his amazing therapists!!
When Jamison started school, just a few short months ago we were signing to him but he was not signing back. Now, I am pleased to report Jamison currently signs:
- More (mastered!)
- Please (mastered!)
- Milk
- Help
- Shoes
- All Done
- Diaper (imitates)
- Fruit
Jamison's imitation skills have improved SO much recently. He will copy you when you tell him to touch your head, nose and mouth. He also does that with me at home and will touch his leg and foot!
To anyone that says developmentally delayed children will do well with or without therapy, I say you haven't met Jamison yet! I could never have imagined he would be where he is today, and know without a doubt it is all because of his amazing therapists!!
Monday, May 11, 2009
Missing the Sunny California Weather!
We've just gotten home to our chilly North Idaho weather! It's been raining and a high of 48 degrees today! Nothing like the warm sun we just got back from! We're missing our family already, but Jamison was so excited to get to school today. He had a pretty good day but it took him a little bit to get back into the swing of things.
Here are a couple more pictures from the trip. ENJOY!
Jamison and I at the San Diego Zoo
Justin with his two beautiful cousins!
Here are a couple more pictures from the trip. ENJOY!
Jamison and I at the San Diego Zoo
Justin with his two beautiful cousins!
Thursday, May 7, 2009
Giraffes as tall as daddy!
Justin and I got the chance to take Jamison down to visit his Great-Grandparents in California. He had so much fun with them and made so much more eye contact than he used to. They were having a blast watching Jamison organize EVERYTHING in the house also!
We also got to spend a day at the San Diego Zoo and took Jamison to see all of the animals. I think he had a lot more fun than expected. Most of the animals were lazy because it was so hot out, but the Elephants and the Giraffes especially caught Jamison's eye! He loved to watch the giraffes eat and run around. They even had a baby Giraffe only 11 weeks old that he liked to watch stumble around!
It's our last day here, but we'll be taking pictures on the way home, so keep a look out! LOVE SHELLY.
Monday, April 27, 2009
Jamison's Dental Appointment
To anyone interested, Jamison had a great appointment and everything went well today. Luckily, the nurse had "goofy-juice" for him to drink so he was very happy today! Grandma, Grandpa, Mom & Dad all got to go with him to his appointment and he really liked that. He even let Grandpa hold him without crying!!
Keep looking for new stuff on Jamison
Keep looking for new stuff on Jamison
Friday, April 17, 2009
Contact me!!
**CAN NOT RESPOND TO COMMENTS ON THE BLOG**
I know how hard it is to feel like you are the only ones out there, and I certainly know what it feels like to tell people what you are going through but not really feel like they truly understand what it's like to raise a child with this. All of the effort you put into it, all of the ups and downs you go through when discovering this diagnosis.
I want you to know that there is someone you can talk to. Someone that can relate with probably everything you have gone and will go through and I can be reached so easily.
Please, don't ever hesitate to pick up the phone or write an email...
Email: shellylynnjones@gmail.com
Myspace: myspace.com/shellylynnjones
I know how hard it is to feel like you are the only ones out there, and I certainly know what it feels like to tell people what you are going through but not really feel like they truly understand what it's like to raise a child with this. All of the effort you put into it, all of the ups and downs you go through when discovering this diagnosis.
I want you to know that there is someone you can talk to. Someone that can relate with probably everything you have gone and will go through and I can be reached so easily.
Please, don't ever hesitate to pick up the phone or write an email...
Email: shellylynnjones@gmail.com
Myspace: myspace.com/shellylynnjones
PB & J-Man
FINALLY! Jamison has started eating something others would consider food and not junk or candy for meals! He's eating PB&J sandwiches and I'm loving it!! I have bought all different types of jam and he seems to not really mind the couple that I have given him so far! YAY!
Unfortunately, I did not include a picture of Jamison because my hard drive is no longer working. I basically have lost every picture I've ever taken of Jamison besides my favorite ones that I had already printed out :(. So please enjoy this cool picture I found of Jamison's favorite meal!
Love you all and keep checking back. I'll be posting pictures from our upcoming trip to California and the S.D. Zoo.
Unfortunately, I did not include a picture of Jamison because my hard drive is no longer working. I basically have lost every picture I've ever taken of Jamison besides my favorite ones that I had already printed out :(. So please enjoy this cool picture I found of Jamison's favorite meal!
Love you all and keep checking back. I'll be posting pictures from our upcoming trip to California and the S.D. Zoo.
Monday, January 26, 2009
Imitating Mommy!
Jamison is starting to understand simple commands! Today I said "Come on let's go!" and he ran to follow me to the door to go to Therapy!! It's amazing how wonderful these therapists are doing with him. I never would have thought last year that he would be where he's at today.
Also, tonight Jamison and I did so much imitating! He imitated me touching his head, arm and leg. I still can't get him to do nose, but he will touch his head instead!
I'm so blessed to have such wonderful Therapists to work with him. His progress is nothing short of amazing, so make sure you keep checking in on his blog!
Also, tonight Jamison and I did so much imitating! He imitated me touching his head, arm and leg. I still can't get him to do nose, but he will touch his head instead!
I'm so blessed to have such wonderful Therapists to work with him. His progress is nothing short of amazing, so make sure you keep checking in on his blog!
Monday, January 5, 2009
Jamison & Therapy
Jamison has been doing so wonderful at school lately! His therapists have been working on imitation play where he has to "touch his head" and other things, and he has been making so much progress with that.
I also recently took him to the doctor and he now weighs 30lbs!! He's in the 25th percentile for weight!! YAY! He's never been above the 7th percentile, so it is pretty awesome that he's doing well in that area now.
Christmas was so much fun. He got so many toys (mostly cars) and really cute clothes. He had so much fun opening his presents and even played cars with Grandpa!
I know it's been a while since I've written about him, but I'll try to stay more on top of it now, it was just a really busy holiday season! LOVE YOU ALL.
I also recently took him to the doctor and he now weighs 30lbs!! He's in the 25th percentile for weight!! YAY! He's never been above the 7th percentile, so it is pretty awesome that he's doing well in that area now.
Christmas was so much fun. He got so many toys (mostly cars) and really cute clothes. He had so much fun opening his presents and even played cars with Grandpa!
I know it's been a while since I've written about him, but I'll try to stay more on top of it now, it was just a really busy holiday season! LOVE YOU ALL.
Thursday, December 18, 2008
Meeting with Gov. Otter
I was one of the people that got an opportunity to meet with Idaho's Gov. "Butch" Otter when he was up here to visit on December 17th, 2008. I spoke to him about the recent decisions to cut Medicaid hours from 30hrs/week down to just 22hrs/week. This cut will have a dramatic effect on all those involved and I wanted to make sure that I tried to do as much as I could to hopefully change their minds.
The Governor listened to me as I spoke about Jamison, and why him and others like him so desperately need these hours. He told me what any one would think he would... he told me that "in these times" and so on about the state of our economy right now.
My question really now is if you take away these precious hours they need now when they are children, isn't the government going to be paying even more to help disabled adults, rather than help these children now and hopefully prevent even more spending in the future because they never got all of the assistance they needed when their brains were still developing and taking in so much more than if they were adults! These are the most critical years and yet they are considering cutting nearly 25% of their hours!!
After I spoke with the Governor they wrote a story in The Coeur d'Alene Press where it mentions both Jamison and I. It really made me happy to know that at least someone heard me, and someone felt strongly enough about my speech to recognize it. Now let's just hope that the Government really heard!
Like I said before, it is so important to make yourself heard. It doesn't take much out of your life to make a difference, even a small one. If we all did it, can you imagine the effect! Write to your Government Officials about your Medicaid hours being cut!!
The Governor listened to me as I spoke about Jamison, and why him and others like him so desperately need these hours. He told me what any one would think he would... he told me that "in these times" and so on about the state of our economy right now.
My question really now is if you take away these precious hours they need now when they are children, isn't the government going to be paying even more to help disabled adults, rather than help these children now and hopefully prevent even more spending in the future because they never got all of the assistance they needed when their brains were still developing and taking in so much more than if they were adults! These are the most critical years and yet they are considering cutting nearly 25% of their hours!!
After I spoke with the Governor they wrote a story in The Coeur d'Alene Press where it mentions both Jamison and I. It really made me happy to know that at least someone heard me, and someone felt strongly enough about my speech to recognize it. Now let's just hope that the Government really heard!
Like I said before, it is so important to make yourself heard. It doesn't take much out of your life to make a difference, even a small one. If we all did it, can you imagine the effect! Write to your Government Officials about your Medicaid hours being cut!!
Thursday, December 11, 2008
Suckers Please!!
Jamison is learning so quickly I can't even believe it. I know that I haven't updated this in a little while and I'm probably forgetting many things, but his newest accomplishment is signing "please" when he wants a sucker!! It appears that he thinks "please" actually means sucker, but it's amazing that he's even doing this sign because we have never taught him that. He just picked it up from watching the other children at school sign "please"!
I am so proud of my little guy. He is coming so far and I know that his progress will surly continue! I am saddened however at the recent 1% cut backs through Medicaid that will be taking his hours from 30hrs/week down to 22hrs/week. Since he only qualifies for this amazing opportunity for 3 years total, it is sad to know that they are even cutting that down further. I know that I should be thankful for any hours at all with these amazing therapists, but to have the hours and then have some of them taken away just breaks my heart.
I am so proud of my little guy. He is coming so far and I know that his progress will surly continue! I am saddened however at the recent 1% cut backs through Medicaid that will be taking his hours from 30hrs/week down to 22hrs/week. Since he only qualifies for this amazing opportunity for 3 years total, it is sad to know that they are even cutting that down further. I know that I should be thankful for any hours at all with these amazing therapists, but to have the hours and then have some of them taken away just breaks my heart.
Tuesday, November 4, 2008
Hi 5!
The most adorable thing happened tonight, Jamison and I went with daddy to work for a couple of hours and when daddy was gone Jamison and I practiced giving each other hi5s! It took only 20 minutes and this boy has it down pat! I love seeing his little moments of progress which are getting more and more frequent lately.
Wednesday, October 29, 2008
Presents
Jamison has received so many wonderful and beautiful presents this year. My favorite is a painting that his Great-Grandmother did of him. It is so beautiful and even Jamison liked to look at it. He did one of his little smiles with his eyes fluttering closed, so I know he loves it! I hung it on his wall in the bedroom. Take a look!
Monday, October 27, 2008
Jamison's 3rd Birthday Parties!
Jamison is so special we're having 3 parties for him! Our first party was with some of Justin's family; Auntie Katlyn, Grandma Gail and Greg, Great-Grandpa Dewey and Great-Grandma Janet and her two friends. They were all so nice and we had a good time. He got so many cute clothes from everyone and some cool cars and a really neat firetruck!
His second party was with my parents and my sister with Ryan and Bobby. He had a joint birthday with Ryan because he just turned 1 on the 23rd! Jamison opened his very first present this year! We were so excited, but not as excited as he was ripping all of the paper! My parents bought the cutest cake for them with little scary eye balls all over peeking at them. It was a very cute Halloween cake. The boys got so many adorable presents, and my parents picked up Jamison's favorite little piggy bank that counts as you put the tokens in it. It's very good for learning and he really loves it. Ryan even got a couple of fingers in the cake before we all got to sing!
His third party will be with the school on Wednesday the 29th, and they are going to have cupcakes with him. I know he's going to have a great time.
Enjoy all of his pictures and get ready to see my little pirate for Halloween!! (Here's a sneek pre-view of him!!!)
His second party was with my parents and my sister with Ryan and Bobby. He had a joint birthday with Ryan because he just turned 1 on the 23rd! Jamison opened his very first present this year! We were so excited, but not as excited as he was ripping all of the paper! My parents bought the cutest cake for them with little scary eye balls all over peeking at them. It was a very cute Halloween cake. The boys got so many adorable presents, and my parents picked up Jamison's favorite little piggy bank that counts as you put the tokens in it. It's very good for learning and he really loves it. Ryan even got a couple of fingers in the cake before we all got to sing!
His third party will be with the school on Wednesday the 29th, and they are going to have cupcakes with him. I know he's going to have a great time.
Enjoy all of his pictures and get ready to see my little pirate for Halloween!! (Here's a sneek pre-view of him!!!)
Jamison's Field Trip to the City Park
Jamison was scheduled for a field trip to Carver Farms to pick pumpkins and go through the corn maze... well, to make a long story short; they were closed! They forgot to tell us after all of the kids and parents made the long trip over there! Nice of them huh?
But on the bright side, all of the kids got to spend some time at the City Park and it was wonderful. Jamison had so much fun running around and walking on the sidewalks!! Here are some pictures for you to enjoy.
But on the bright side, all of the kids got to spend some time at the City Park and it was wonderful. Jamison had so much fun running around and walking on the sidewalks!! Here are some pictures for you to enjoy.
Thursday, October 23, 2008
Baby Blues No More!
Well, I have had so much fun painting Jamison's room. For his 3rd birthday, Justin and I decided that since he is a "big boy" he needs a big boy room. No more baby blues and Blues Clues, we decided to go for a clean and very cute navy blue stripe and trim with a silvery color for the main walls. Jamison kept knocking on the door trying to see what we were doing with his room. It was so adorable, and I think he really enjoys it! Here is a look at before and after!
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