So when was the last time you had a craving for ice cream and jumped in your car and went to the store to grab a half gallon? Or even better drive through Arctic Circle and grab a cone or shake or something? It is great to be able to just go where you want when your available to do so isn't it? Do we really appreciate the independence that driving affords us? Or are some people able to ride their bike around town or walk? It is great exercise to be able to do those things. I am happy that people are able to live their lives independently. Well, individuals who don't have vision or are unable to drive don't have that luxury. Don't get me wrong, I do nto begrudge those who can, I think it is great. We manage pretty well actually. We live close to a store and we walk there normally, once in a while someon ein the church will run me over to do some shopping. We live close to an Arctic Circle so we can simply walk there, even in blizzards (yes, we have done this), and we are close to the bus and take it many places. The problem arises when you are on a time crunch or the bus does not go where you need to go or it is a new place so you are not familiar enough with the surroundings to navigate safely.
Let's give a better example than ice cream. Though not sure what is better than ice cream, but we'll try. haha.
Christmas shopping. SO I arranged to take the local paratransit to the local outdoor mall Jordan's Landing here in West Jordan, Utah. It dropped me off at Wal-mart and one of my sons went with me and we walked around the giant outdoor mall. i Ttakes up about a mile in length and about as much in width. It is an open air mall. So, we did our thing and we had to watch the time to make sure to make it all teh way back to walmart for my half hour window of time when the bus was supposed to pick me and my son up. It worked out, though it was very cold and having to walk up and down the mall outside is hand numbing in winter. But what other choice did I have? I wanted to be able to buy presents for the son I was with but, yeah he was with me. So I had to arrange to come back with someone else, who decided it was their job to tell me that I was spending to much money. Now this person is not my spuse, or parent, just a lady who was wililng to take me to get what I wanted at the store. Let me tell you, noone likes to be told by people who have nothing to do with your finances that you are spending to much, or that you shouldn't buy this or that. It is very aggrivating. Although I don't ever say anything due to their generosity in taking me where I need to go. I was grateful and got my Christmas shopping done, yeah!
OK doctors visits. OH boy, don't we all love to go to the doctors? I don't mind so much, except the extreme effort it takes to get there. There has been many times when my children or I or all have been so sick that it is all I can do to call the doc and make an appointment much less call an entire list of people just to fine one person willing to drive us there, and pick us up. Before I go further I will say that some people are very willing to help, the problem arises when people are not available. This is noone's fault and I am nevery mad at the people if they have other plans. That is just the nature of life. We have had to cancel or postpone mroe than one appointment for lack of transportation.
Or, when I call somone after calling a list of people, no exageration on list either 8 or 9 people is not uncommon, and the person say's to me."Have you tried anyone else?" "if you can't find someone let me know and I'll take you" Are you serious? I tell them I have tried many people and they ask for names. It is probably just a pet peeve I have but I do not appreciate when someone says that to me. hah, there are wonderful caring giving people in the world that are willing to give of their time to help us out.
It is amazing that people are willing to put themselves out there for anyone much less drive them places, but there are people like that. It truly has helped us many, many times. We try our best to be as independant as possible, it just is difficult when you can not see what you are doing and have to do what is needed for your family without some kind of help.
I love my children and my home, and I love to be able to just go out and do things with them or by myself. This however is a huge challenge in our lives and I accept it and normally stay pretty positive abou tit, I never get upset at people for saying they can't help us. (ok except when they ask that horrid question haha) I give gas money as I can and/or we exchange services so that they are not out too much. I do love when I can take a cab (when I have the money) to the movie theatre, watch a movie with the kids have ice cream and Stone Cold Ice cream and take a cab home. It feels great, noone snooping in my business, and noone who has to hurrry so they can get home to their own families. I can take however much time I need to ro can. That is the beauty of indpendent living. I appreciate all those who heve helped us and I pray that the Lord will bless them for ther kindness.
I would love to drive some day, but it won't happen unless the Lord helas my eyes. It is His will that guides me.
My youngest son, Charles is turning 15 this spring and I am not sure about his ability to drive. HE has high functioning autism, but his eyes are fine. We shall see! We also will see about finding someone who will teach him to drive. Interesting dilema. :) Oh well, it will come soon enough. Life is good and thanks for reading!
Thursday, January 28, 2010
Tuesday, January 26, 2010
Blindness
There are days in anyone's life that one just has to hang on and pray they live through the day. Well I have had my share of those days for sure. Saturday was one of those days. Some of the day was great such as going to the temple. However even at the temple, it was hard going by myself. TO understand this one must think of going to someplace they are not familiar with and you are wearing blinders on and you are expected to find your way around without any problem. I do have some vision but it is very narrow so I felt I would do fine at the temple. However, I have lost more vision than I have even admitted to myself, so it was very difficult for me to get to wear I was going. Then when I did someone asked me to give me my cane so I didn't trip someone. UGH, they helped me but it was just a feeling of helplessness that comes from having to depend on others. I decided to swalllow my pride and just enjoy the experience ad I did very uch.
Later that day I realized that my kids had done something that is not real good. and instead of saying they were sorry, they turned it aorund to somehow blame me. HOLY COW, I then went to ameeting and came home to a child who was being as grumpy as possible. I decided to just go to bed and hope for better.
Sunday was nice until the afternoon with more aggrivating attitudes, it got to a point that I had to take a walk or loose my temper. So I grabbed my cane, jacket, purse and left for a walk, well it was dark. I have no night vision at all. I started walking and realized very quickly that I had no where to go and it was not very safe for me to be out by myself in the dark. It was so frustrating that I couldn't even get myself down the street more than 100 yards. This is reality. But at times it is very frustrating. I felt I had nowhere and noone to turn to. But I was wrong The Savior is there for me and I do have a few friends that mean more to mean the gold.
A little about Retinitis Pigmentosa. RP is a digenerative(sp?) eye disease. So basically, the rods and cones in the retina are not firing correctly and pigmetn collects on the retina and where the pigment is I do not see. I have tunnerl vision which is less than 7 degrees in both eyes. Think about that, Majority of people in the US have close to 180 degrees. Dramatic huh? Well, anyway, I normally don't let it bother me but at times it does. I will eventually be totally blind. So I appreciate the vision, however limited that I do have. :) Anyway, jsut a glimpse into some of the frustration that happen. If anyone has any ideas on some good relaxation and stress relievers that don't require sight, let me know! :)
Later that day I realized that my kids had done something that is not real good. and instead of saying they were sorry, they turned it aorund to somehow blame me. HOLY COW, I then went to ameeting and came home to a child who was being as grumpy as possible. I decided to just go to bed and hope for better.
Sunday was nice until the afternoon with more aggrivating attitudes, it got to a point that I had to take a walk or loose my temper. So I grabbed my cane, jacket, purse and left for a walk, well it was dark. I have no night vision at all. I started walking and realized very quickly that I had no where to go and it was not very safe for me to be out by myself in the dark. It was so frustrating that I couldn't even get myself down the street more than 100 yards. This is reality. But at times it is very frustrating. I felt I had nowhere and noone to turn to. But I was wrong The Savior is there for me and I do have a few friends that mean more to mean the gold.
A little about Retinitis Pigmentosa. RP is a digenerative(sp?) eye disease. So basically, the rods and cones in the retina are not firing correctly and pigmetn collects on the retina and where the pigment is I do not see. I have tunnerl vision which is less than 7 degrees in both eyes. Think about that, Majority of people in the US have close to 180 degrees. Dramatic huh? Well, anyway, I normally don't let it bother me but at times it does. I will eventually be totally blind. So I appreciate the vision, however limited that I do have. :) Anyway, jsut a glimpse into some of the frustration that happen. If anyone has any ideas on some good relaxation and stress relievers that don't require sight, let me know! :)
Monday, January 25, 2010
Order of the Arrow accomplishment
I am one proud mama. My youngest son, Charles, came home Saturday from a Boy Scout winter camp with a big smile and a red arrow head. He told me that he was elected to be a member of "order of the arrow". He qualifed because he has obtained his first class rank and has had 15 capmouts. He is only 14, and is thrilled. This despite some rough goes.
He is a very friendly loving young man who is always wiling to help another person. He marches to the beat of a different drummer and that has created alot of prejudice amungst his peers and his leaders in the past. He was diagnosed with Autism pddnow about 2 1/2 years ago. We knew something was a bit different with him but he seemed failry "average" compared to the problems we had with Jimmy. We tried to get him assistance but to no avail until we moved from Oregon to Utah. Within 9 months of us moving here he was diagnosed. His 6th grade teacher immediatly recognized some red flags. When he eventually was diagnosed with Autism (pddnos) the treatmetn did not improve right away. Instead of blaming bad parenting for his odd behavior, they blamed him and tried to limit his contribution to the troop. He did not do alot with scouts for a while because of that. One of the things that sticks out in my mind is one Wednesday evening, the scouts had made plans to go visit the police station. I had arranged with the scout master to pick up Charles and take him along. I spoke with him 15 minutes before it was time to verify he had planned on taking him. Charles went out on our orch and waited for him, he never came to get him. He was not a happy camper, I called my oldest son who happened to be with the Bishop and so I told him what had happened and he had his councilor come pick up Jason and rushed him over to the station, unfortunatly, the tour was almost over, so he missed out. The saddest part is that he wants more than anything to become a detective. The gentlemethan rushed him over felt awful for him and so took him to have some ice cream. That was nice, but it wasn't as cool as touring a police station. Come to find out they had not wanted Charles to come because they didn't understand autism. They were afraid of it. It is not contagious you can not catch it by being near someone who has the disorder and you can't get it from touching them either. Despite this, after about a year, he got back into scouts with a new troop who has been a bit better with him. Thankfully, he has perceveired and though many people aren't sure how to act around him, they quickly find out he is quirky but he is trustworthy, loyal, helpful, kind, obedient, cheerful, thrifty, etc... and is a boy who wants to participate just like everyone else does. So I am very pleased that he has stuck to it and has accomplished being elected by his peers to join the Order of the Arrow. !!
He is a very friendly loving young man who is always wiling to help another person. He marches to the beat of a different drummer and that has created alot of prejudice amungst his peers and his leaders in the past. He was diagnosed with Autism pddnow about 2 1/2 years ago. We knew something was a bit different with him but he seemed failry "average" compared to the problems we had with Jimmy. We tried to get him assistance but to no avail until we moved from Oregon to Utah. Within 9 months of us moving here he was diagnosed. His 6th grade teacher immediatly recognized some red flags. When he eventually was diagnosed with Autism (pddnos) the treatmetn did not improve right away. Instead of blaming bad parenting for his odd behavior, they blamed him and tried to limit his contribution to the troop. He did not do alot with scouts for a while because of that. One of the things that sticks out in my mind is one Wednesday evening, the scouts had made plans to go visit the police station. I had arranged with the scout master to pick up Charles and take him along. I spoke with him 15 minutes before it was time to verify he had planned on taking him. Charles went out on our orch and waited for him, he never came to get him. He was not a happy camper, I called my oldest son who happened to be with the Bishop and so I told him what had happened and he had his councilor come pick up Jason and rushed him over to the station, unfortunatly, the tour was almost over, so he missed out. The saddest part is that he wants more than anything to become a detective. The gentlemethan rushed him over felt awful for him and so took him to have some ice cream. That was nice, but it wasn't as cool as touring a police station. Come to find out they had not wanted Charles to come because they didn't understand autism. They were afraid of it. It is not contagious you can not catch it by being near someone who has the disorder and you can't get it from touching them either. Despite this, after about a year, he got back into scouts with a new troop who has been a bit better with him. Thankfully, he has perceveired and though many people aren't sure how to act around him, they quickly find out he is quirky but he is trustworthy, loyal, helpful, kind, obedient, cheerful, thrifty, etc... and is a boy who wants to participate just like everyone else does. So I am very pleased that he has stuck to it and has accomplished being elected by his peers to join the Order of the Arrow. !!
Friday, January 22, 2010
Sence of Humor
I have to say that my middle son, has an incredible sence of witt. He is always making me laugh. There is a story that I can tell without embarrassing him TOO much, of last September.
My oldest son, Phil, had his 19th birthday party at our house where several lady friends attended as well as several male friends. We all started pplaying the game Apples2Apples and the teenage guys were practically throwing themselves at the cute girls. Somehow, Jimmy managed to sit next to two of the girls and one of the topics on the game we were playing was "adorable" So owe all picked a card out of our decks that owuld fit adorable, Well, Jimmy, put in a "make your own card" and so when the girl asked him what his card would say for adorable he looked at her and without batting an eye said, you. haha Needless to say, he won the round.
TO appreciate this story one must understand that children who have Asperger's Syndrome typically have difficulty teling or understanding jokes, they have poor social skills and are not sure what to say to people. So when he says something out of the blue like that it shows the true witt he has inside himself. He at times, will say things randomly that are so hilarious that we are dying of laughter and he is just sitting there asking "what's so funny?" I try to explain to him what it was that made us laugh about what he said, but he doesn't get it normally. As he has gotten older he is starting to recognize timing of comments and so his sense of humor is improving as well.
Asperger's is part of the Autism Spectrum. It is closely related to High functioning Autism. He has high intellect, it is the comprehension of things, and the social aspects that are so obvious with him.
I love his sense of humor and am pleased that it is improving. Now, let's work on the "policemans' mentality" more on that another itme.
My oldest son, Phil, had his 19th birthday party at our house where several lady friends attended as well as several male friends. We all started pplaying the game Apples2Apples and the teenage guys were practically throwing themselves at the cute girls. Somehow, Jimmy managed to sit next to two of the girls and one of the topics on the game we were playing was "adorable" So owe all picked a card out of our decks that owuld fit adorable, Well, Jimmy, put in a "make your own card" and so when the girl asked him what his card would say for adorable he looked at her and without batting an eye said, you. haha Needless to say, he won the round.
TO appreciate this story one must understand that children who have Asperger's Syndrome typically have difficulty teling or understanding jokes, they have poor social skills and are not sure what to say to people. So when he says something out of the blue like that it shows the true witt he has inside himself. He at times, will say things randomly that are so hilarious that we are dying of laughter and he is just sitting there asking "what's so funny?" I try to explain to him what it was that made us laugh about what he said, but he doesn't get it normally. As he has gotten older he is starting to recognize timing of comments and so his sense of humor is improving as well.
Asperger's is part of the Autism Spectrum. It is closely related to High functioning Autism. He has high intellect, it is the comprehension of things, and the social aspects that are so obvious with him.
I love his sense of humor and am pleased that it is improving. Now, let's work on the "policemans' mentality" more on that another itme.
Thursday, January 21, 2010
A little about my family
OK, time to introduce my family and discribe our disabilities:
I have Retinitis Pigmentosa, which is an inherited, degenerative eye disease. So, I do have some vision, but am loosing a little all the time until one day unless the Lord stop's it, I will be totally blind. I have been a single mother for 4 1/2 years and have graduated from college with my Associates Degree in 2006 and with my Bachelor of Science this past December. I have been a stay at home for majority of my kids life but for the past 3 years have been a Substitute teacher at a local High School. I graduated in Music and Special Education. I have worked as an advocate for parents who have children with disabiliteis as well as a peer support consultant. I do know some things about disability law, though truly to know everything is impossible it seems.
My oldest son, is legally blind with the same disorder I have. He also was diagnosed with ADD (AttentionDeficit Disorder) He graduated from High School a year and a half ago and attended college for a year before starting a service mission for his church this month. It will last 2 years. He worked for Arctic Circle for the past 4 years and just recently quit for his mission. He has had alot of experiences that I will share regarding working in the fast food industry with a vision loss and the trials of dating.
My middle son, Jimmy, has several disorders. He has Aspergers Syndrome, Oppositional Defiance Disorder, Dyspraxia of Speech, Retinitis Pigmentosa (eye disease), and ADD. Jimmy is a junio at the local High School and spends the rest of his time either playing video games, chatting about video games, or once in a while reading a book. The combination of his disabilities has led to a very fun time for me. I'll explain more another time. :)
My youngest son has Autism PDDNOS that is Autism Pervasive Developmental Disorder, Not Otherwise Specified) He is a freshman at a local middle school and is eagerly awaiting entry into high school. He loves to read manga's, watch Japanese Aname. He also likes to play video games and reads once in a while.
As you can tell so far, my kids are all going through general education and we have had alot of trials with the schools. However, things have improved for there special education needs as I become more educated with the laws. We have a busy life though it is definatly different than others as far as we are more home bodies than other's but we still lead a full rich life full of ups and downs like everyone else. Every person ever born has a unique set of genes and chromosones. But, every person has the exact same basic need, breathing, food, shelter, and love. Every life is important and every person is a child of God.
I will say that my family and I are members of the Church of Jesus Christ of Latter-Day Saints, and that we love the Lord, Jesus Christ with all our hearts, mind, and strength. I will not hide my beliefs and I respect everyone's right to believe as his or her choice. I would request that this blog be used for understanding people with disabilities and not as a forum for bashing anyone's beliefs.
I'll write more soon,
Brownierose
I have Retinitis Pigmentosa, which is an inherited, degenerative eye disease. So, I do have some vision, but am loosing a little all the time until one day unless the Lord stop's it, I will be totally blind. I have been a single mother for 4 1/2 years and have graduated from college with my Associates Degree in 2006 and with my Bachelor of Science this past December. I have been a stay at home for majority of my kids life but for the past 3 years have been a Substitute teacher at a local High School. I graduated in Music and Special Education. I have worked as an advocate for parents who have children with disabiliteis as well as a peer support consultant. I do know some things about disability law, though truly to know everything is impossible it seems.
My oldest son, is legally blind with the same disorder I have. He also was diagnosed with ADD (AttentionDeficit Disorder) He graduated from High School a year and a half ago and attended college for a year before starting a service mission for his church this month. It will last 2 years. He worked for Arctic Circle for the past 4 years and just recently quit for his mission. He has had alot of experiences that I will share regarding working in the fast food industry with a vision loss and the trials of dating.
My middle son, Jimmy, has several disorders. He has Aspergers Syndrome, Oppositional Defiance Disorder, Dyspraxia of Speech, Retinitis Pigmentosa (eye disease), and ADD. Jimmy is a junio at the local High School and spends the rest of his time either playing video games, chatting about video games, or once in a while reading a book. The combination of his disabilities has led to a very fun time for me. I'll explain more another time. :)
My youngest son has Autism PDDNOS that is Autism Pervasive Developmental Disorder, Not Otherwise Specified) He is a freshman at a local middle school and is eagerly awaiting entry into high school. He loves to read manga's, watch Japanese Aname. He also likes to play video games and reads once in a while.
As you can tell so far, my kids are all going through general education and we have had alot of trials with the schools. However, things have improved for there special education needs as I become more educated with the laws. We have a busy life though it is definatly different than others as far as we are more home bodies than other's but we still lead a full rich life full of ups and downs like everyone else. Every person ever born has a unique set of genes and chromosones. But, every person has the exact same basic need, breathing, food, shelter, and love. Every life is important and every person is a child of God.
I will say that my family and I are members of the Church of Jesus Christ of Latter-Day Saints, and that we love the Lord, Jesus Christ with all our hearts, mind, and strength. I will not hide my beliefs and I respect everyone's right to believe as his or her choice. I would request that this blog be used for understanding people with disabilities and not as a forum for bashing anyone's beliefs.
I'll write more soon,
Brownierose
My first blog
Hello Everyone, this is my first blog. I'll start by explaining what this blog is about. It is about my life as a single blind mom who has 3 boys. Why is that something to write about? Well, the three boys of which I speak all have some kind of disability. So, as a single mom who has a disability and has children with their disabilities I wanted a forum where people can read what it is like to live life with a disability.
There are many disabilities in the world and is the only group where anyone can join it at any timeand is the largest growing group in the world. It is also largely misunderstood.
My goal is to share with the world, the ups and downs of real life of a family who has disabilities. I would invite people to share their experiences as well, both positive and not so positive. However, I will not divulge the identity of my children for their privacy is important to me. I look forward to this and to see where it may lead! Feel free to comment! Keep it clean though please!
Sincerely,
brownierose
There are many disabilities in the world and is the only group where anyone can join it at any timeand is the largest growing group in the world. It is also largely misunderstood.
My goal is to share with the world, the ups and downs of real life of a family who has disabilities. I would invite people to share their experiences as well, both positive and not so positive. However, I will not divulge the identity of my children for their privacy is important to me. I look forward to this and to see where it may lead! Feel free to comment! Keep it clean though please!
Sincerely,
brownierose
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