School has started in our area and now I am trying to find activities to fill Jonathon's day since he's no longer in the school system. HOORAY! He wants to know everyday what he is going to be doing. I think he has a right to know what his day will look like. The problem is he wants to know "where are you going to take me to do something I want to do today?"
There are days when I need to stay home and get stuff done around the house and he does not want to hear "we're staying home." I think my goal will be to make a point of taking him out each day. Even if our outing is just to the post office, grocery store, or library.
Which speaking of... I told him we would go for a walk today... it's now 9:00p.m. and he is insisting on going for a walk and has even found a lantern to address the problem of it being dark outside... gotta go!
Saturday, August 27, 2011
Sunday, August 14, 2011
Help
Does anyone out there in blogland have any ideas on how to help me help Jonathon gain a better understanding of death?
We have shown him and involved him in the death of animals and extended family for years, so he has seen what death looks like. My struggle is he thinks we leave dead people at the cemetary and that's where they live. I need a way to help him understand our belief that we have a spirit and that when we die our spirit will go to heaven.
A minister used a tent as an analogy... yeah, even I didn't get that! He was saying that our bodies are our tents and that some tents are fragile and collapse or die (???). Uhmmmm, I guess... but where does our spirit leaving the body come into play? Because what's inside my tent is my sleeping bag and pillow! LOL!
I'm thinking of taking a balloon filled with helium and putting it in a box. I will tell Jonathon that we are pretending (for the most part he gets pretending) that our bodies are the box and inside is our spirit and then open the box and he can visually see the balloon rise and go out of sight. Then do I bury the box??? Can anyone suggest a better "container" to depict the body?
What do you all think or do you have any other suggestions?
THANK YOU!!!
Mom-Vickie
We have shown him and involved him in the death of animals and extended family for years, so he has seen what death looks like. My struggle is he thinks we leave dead people at the cemetary and that's where they live. I need a way to help him understand our belief that we have a spirit and that when we die our spirit will go to heaven.
A minister used a tent as an analogy... yeah, even I didn't get that! He was saying that our bodies are our tents and that some tents are fragile and collapse or die (???). Uhmmmm, I guess... but where does our spirit leaving the body come into play? Because what's inside my tent is my sleeping bag and pillow! LOL!
I'm thinking of taking a balloon filled with helium and putting it in a box. I will tell Jonathon that we are pretending (for the most part he gets pretending) that our bodies are the box and inside is our spirit and then open the box and he can visually see the balloon rise and go out of sight. Then do I bury the box??? Can anyone suggest a better "container" to depict the body?
What do you all think or do you have any other suggestions?
THANK YOU!!!
Mom-Vickie
Saturday, August 6, 2011
Family Death
I haven't written in forever it seems. A little over a week ago my extended families lives were turned upside down when my 15 year old niece, Kimberley, died unexpectedly from a fall. As usual Jonathon just being Jonathon helped us through in a time of complete sadness.
Jonathon has so many aunts, uncles and cousins he has a hard time remembering everyone's names. When we heard about Kimberley I asked Jonathon if he knew who uncle Richard was and he responded "yes." I asked if he knew who Kimberley was. The tone of his response "I know her" told me he knew the seriousness of what I was about to tell him. I explained that she was hurt very badly and was going to die.
We had been out camping and had a good 6 hour drive ahead of us to get home to our family. Jonathon who is usually extremely talkative sat quietly while my sister and I made phone calls.
On the drive home my sister and I were in tears off and on. At one point Jonathon said "Mom-Vickie and Aunt Mary are crying and sad. I can help you smile." I looked in my rear view mirror and saw him with the most genuine smile he could muster. We're lucky to see a bit of a sheepish grin on his face once in awhile, so his attempt at a smile to cheer us up was much appreciated.
Jonathon has so many aunts, uncles and cousins he has a hard time remembering everyone's names. When we heard about Kimberley I asked Jonathon if he knew who uncle Richard was and he responded "yes." I asked if he knew who Kimberley was. The tone of his response "I know her" told me he knew the seriousness of what I was about to tell him. I explained that she was hurt very badly and was going to die.
We had been out camping and had a good 6 hour drive ahead of us to get home to our family. Jonathon who is usually extremely talkative sat quietly while my sister and I made phone calls.
On the drive home my sister and I were in tears off and on. At one point Jonathon said "Mom-Vickie and Aunt Mary are crying and sad. I can help you smile." I looked in my rear view mirror and saw him with the most genuine smile he could muster. We're lucky to see a bit of a sheepish grin on his face once in awhile, so his attempt at a smile to cheer us up was much appreciated.
Wednesday, July 20, 2011
First meeting
Today is Jonathon's "brother-friend's" birthday. The "brother-friend" being Lindsey's boyfriend, David, so in honor of his birthday a little story about the first time David met Jonathon.
Lindsey and David had come over to the house to have dinner and for David to meet Jonathon. David had no idea the things that can come out of Jonathon's mouth and that most of the time what Jonathon says is echolalia. We were sitting at the dinner table when Jonathon looks at David and says "David hit me in the face!" The expression on David's face was priceless as he exclaimed "I didn't hit you in the face!"
The rest of us got a chuckle out of it because we knew it was movie talk, but David had no idea! What an introduction to the family! Even that incident 5 1/2 years ago didn't scare David off, but David does recall that evening frequently!
Happy Birthday David and thank you for being such a good "brother-friend" to Jonathon!
Lindsey and David had come over to the house to have dinner and for David to meet Jonathon. David had no idea the things that can come out of Jonathon's mouth and that most of the time what Jonathon says is echolalia. We were sitting at the dinner table when Jonathon looks at David and says "David hit me in the face!" The expression on David's face was priceless as he exclaimed "I didn't hit you in the face!"
The rest of us got a chuckle out of it because we knew it was movie talk, but David had no idea! What an introduction to the family! Even that incident 5 1/2 years ago didn't scare David off, but David does recall that evening frequently!
Happy Birthday David and thank you for being such a good "brother-friend" to Jonathon!
Tuesday, July 12, 2011
Mentally Challenged
Jonathon, being frustrated with my continual request of "come here please" and me giving him another chore, commented "VICKIE! ARE YOU MENTALLY CHALLENGED FOR THAT COME HERE?!" I asked him what movie it was from and he told me 'Monster House." Even though it's echolalia he changed it up enough to make it HIS own unique language, which makes it functional echolalia... I guess! LOL!!!
Sunday, July 3, 2011
Independence Day
My Fourth of July post is a wish that ALL people who are affected with a disability would have a life of freedom from institutional living; those who follow my blog know that I feel strongly that group homes are nothing more than scaled down institutions!
I will always fight for Jonathon's choice to live where HE wants! Not where it's convenient for the system to care for him!
I'm sure I will post more on this later since it is definitely my soap box!!
Have a healthy, happy, and safe Fourth of July FREE to make your own decisions regarding your life!
I will always fight for Jonathon's choice to live where HE wants! Not where it's convenient for the system to care for him!
I'm sure I will post more on this later since it is definitely my soap box!!
Have a healthy, happy, and safe Fourth of July FREE to make your own decisions regarding your life!
Thursday, June 30, 2011
Don't Beat Yourself Up!
"Don't beat yourself up about mistakes you've made; there are plenty of other people in this world who will be more than happy to do it for you."
Years ago, another parent shared those words with me and they have carried me through many moments when I have felt like I wasn't doing anything right for Jonathon, or our daughter, Lindsey, for that matter.
Everyone has those days when they feel like the World's Worst Mom or Dad award winner. I would like to pass my friend's advice on to other parents but I would like to add to it... When you're feeling like the World's Worst Mom or Dad award is about to be bestowed upon you... make an extra donation to your child's therapy fund! It erases all your mistakes!
Years ago, another parent shared those words with me and they have carried me through many moments when I have felt like I wasn't doing anything right for Jonathon, or our daughter, Lindsey, for that matter.
Everyone has those days when they feel like the World's Worst Mom or Dad award winner. I would like to pass my friend's advice on to other parents but I would like to add to it... When you're feeling like the World's Worst Mom or Dad award is about to be bestowed upon you... make an extra donation to your child's therapy fund! It erases all your mistakes!
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