This week we made a public service announcement!
The DePaul students came to the office and helped me work on a sixty second spot about how to make more people aware of Dyspraxia and how to get support for our organization. It was challenging because I had to try not to repeat things or say words in the wrong order. I was also worried about forgetting what I meant to say. We decided to write a script, and managed to come up with a great one in about an hour. The announcement is now on CD and will be sent to radio stations all over the country!
I also continued calling parent led Special Educational Support systems in the United States. Some were sorry they could not help and others really wanted to get involved. I spoke with the New Jersey chapter of SPAN (Statewide Parent Advocacy Network) and they told me they would link to our website! This helps make our website available to parents in other states. The director also gave me suggestions of ways to help our organization. I was so pleased.
I received a reply yesterday to a voice message I left for the CanChild Centre for Disability Research in Canada. The director told me she was so excited that there is now a Dyspraxia organization in the United States. She set up a meeting with me by telephone and has offered to help us network with international medical specialists who are knowledgeable about Dyspraxia. Medical support from around the world will help make Dyspraxia USA be taken seriously. I am getting very excited! I know things will take time, but people are speaking to me and taking the message to heart. It is time to make Dyspraxia a national issue in the United States!
Monday, October 29, 2007
Tuesday, October 23, 2007
Multi-processing
I have been very busy with two important projects during the past two weeks. The first project concerned the assessment of the organization by students from DePaul University. Two students came into my office to work with us on creating a strategic business plan for Dyspraxia USA. I was fortunate to have a member of the organization provide the students with information about Dyspraxia from the prospective of a parent. During the hour meeting we also kicked around ideas about how to get the organization off the ground.
The students came up with a great idea! We are going to be working on a public service announcement explaining what Dyspraxia is and how to contact the organization. The service announcement will get air time on the Chicago Radio Stations. I believe this is a great idea! And... it has an added benefit for me. The more I go out there and speak about the organization and Dyspraxia, the more I learn what should and shouldn’t be said. What a great learning experience.
I decided that although I might confuse words or put them in the wrong order, it was time to start using the phone instead of sending letters and emails. This week I chose to concentrate on Parent Led Special Educational groups. I used a service that provides information for special education in each state. I was a bit nervous at first. Would the Directors take me seriously? Would they understand what I was trying to say? I must say that so far it is going very well. I have been contacted by a number of these groups and chatted in depth with the directors.
I am learning the importance of patience, self confidence, and the ability to trust myself. If I did not believe in myself, I would not have contacted these people. Because I contacted them, I have been able to spread the word about Dyspraxia and our organization. Patience is needed because growth will be slow and there may be setbacks. But, we are making strides in many more areas and will eventually get there!
The students came up with a great idea! We are going to be working on a public service announcement explaining what Dyspraxia is and how to contact the organization. The service announcement will get air time on the Chicago Radio Stations. I believe this is a great idea! And... it has an added benefit for me. The more I go out there and speak about the organization and Dyspraxia, the more I learn what should and shouldn’t be said. What a great learning experience.
I decided that although I might confuse words or put them in the wrong order, it was time to start using the phone instead of sending letters and emails. This week I chose to concentrate on Parent Led Special Educational groups. I used a service that provides information for special education in each state. I was a bit nervous at first. Would the Directors take me seriously? Would they understand what I was trying to say? I must say that so far it is going very well. I have been contacted by a number of these groups and chatted in depth with the directors.
I am learning the importance of patience, self confidence, and the ability to trust myself. If I did not believe in myself, I would not have contacted these people. Because I contacted them, I have been able to spread the word about Dyspraxia and our organization. Patience is needed because growth will be slow and there may be setbacks. But, we are making strides in many more areas and will eventually get there!
Thursday, October 11, 2007
The First Step's a Doozy!
Last week was a very special week for me. One of our new members from California came to Chicago on business and arranged to meet with me as well. We chatted a few times on the phone and he and his wife seemed very keen to help with ideas about how to get our organization off the ground.
I was a bit nervous about his visit because it had been a while since a new member had come to the office to chat. Once he arrived, he told me about a meeting he had arranged with my local congress person to discuss Dyspraxia and Dyspraxia USA. I was so excited and nervous at the same time. I had no time to prepare for such an important meeting!
The next morning, we met for coffee and discussed how to present the information I wanted to get across to my representative. We divided the information by age, jobs, health, and articles regarding Dyspraxia from around the world. The whole point of this meeting was to make them aware of the condition and to get them involved in helping us spread information out about Dyspraxia.
We met with the Deputy District Director for Congressman Rahm Emanuel and provided information from a parent’s perspective and from my perspective as an adult. We both talked about how Dyspraxia affected us and our families. The meeting lasted over an hour, and the director appeared to almost be in tears at times.
Most people know that at least 10 million people in the United States have some type of cancer, but how many know that at least 6 to 10 percent of the population have Dyspraxia? We are trying impress people with the fact that this disability affects millions of children and parents in our country and they need our help. We are trying to get the word out not only to our community but to everybody!
We know this is just the first step, but what a first step it was! It was a doozy!
I was a bit nervous about his visit because it had been a while since a new member had come to the office to chat. Once he arrived, he told me about a meeting he had arranged with my local congress person to discuss Dyspraxia and Dyspraxia USA. I was so excited and nervous at the same time. I had no time to prepare for such an important meeting!
The next morning, we met for coffee and discussed how to present the information I wanted to get across to my representative. We divided the information by age, jobs, health, and articles regarding Dyspraxia from around the world. The whole point of this meeting was to make them aware of the condition and to get them involved in helping us spread information out about Dyspraxia.
We met with the Deputy District Director for Congressman Rahm Emanuel and provided information from a parent’s perspective and from my perspective as an adult. We both talked about how Dyspraxia affected us and our families. The meeting lasted over an hour, and the director appeared to almost be in tears at times.
Most people know that at least 10 million people in the United States have some type of cancer, but how many know that at least 6 to 10 percent of the population have Dyspraxia? We are trying impress people with the fact that this disability affects millions of children and parents in our country and they need our help. We are trying to get the word out not only to our community but to everybody!
We know this is just the first step, but what a first step it was! It was a doozy!
Sunday, September 30, 2007
A Really Productive Week!
We are starting to attract some local support in the Chicago community! During the past week, I had a meeting with a DePaul student who happens to have Sensory Integration Dysfunction. She came into the office to discuss her ideas about how to get us more organized. She has come up with some great plans for ways to help me be more organized and have more structure in the office.
I was contacted by the head of the Public Service Program at DePaul University after attending a lecture, and his students have decided to take on Dyspraxia USA NFP as their group project. Having others take an interest in us and try to help get things going is a dream come true!
Saturday was a scary day because I had to go to a conference. I think I have told you that I have major spatial concerns and can’t drive. I have to rely on friends, GPS, or written instructions to a cab driver to get where I need to be. With a lot of help from a dear friend, I managed to get there - and on time.
One of the speakers at the conference was a Pediatric Psychologist. I decided I would try to take this opportunity to spread a little awareness. When it was time for questions, I stood up and said, “I have Dyspraxia and I am very proud of who I am, but I need support so I can help parents, professionals and others like me”. The speaker pulled me to the side we chatted for 15 minutes. He asked me to call him next week. He told me he agreed with what I was saying and that he was amazed someone took the initiative to start an organization. He agreed to mentor me and the board members and gave me his number.
I felt great because I spoke out and was able to express my thoughts to a well known professional. The fact that I gained the support of a person who has great knowledge of Dyspraxia was even better. I felt very pleased and this was all because I made the effort to be there physically instead of sending a note, email or voice message. I came in person and demonstrated what Dyspraxia is like in the flesh!
What a great week!
I was contacted by the head of the Public Service Program at DePaul University after attending a lecture, and his students have decided to take on Dyspraxia USA NFP as their group project. Having others take an interest in us and try to help get things going is a dream come true!
Saturday was a scary day because I had to go to a conference. I think I have told you that I have major spatial concerns and can’t drive. I have to rely on friends, GPS, or written instructions to a cab driver to get where I need to be. With a lot of help from a dear friend, I managed to get there - and on time.
One of the speakers at the conference was a Pediatric Psychologist. I decided I would try to take this opportunity to spread a little awareness. When it was time for questions, I stood up and said, “I have Dyspraxia and I am very proud of who I am, but I need support so I can help parents, professionals and others like me”. The speaker pulled me to the side we chatted for 15 minutes. He asked me to call him next week. He told me he agreed with what I was saying and that he was amazed someone took the initiative to start an organization. He agreed to mentor me and the board members and gave me his number.
I felt great because I spoke out and was able to express my thoughts to a well known professional. The fact that I gained the support of a person who has great knowledge of Dyspraxia was even better. I felt very pleased and this was all because I made the effort to be there physically instead of sending a note, email or voice message. I came in person and demonstrated what Dyspraxia is like in the flesh!
What a great week!
Friday, September 21, 2007
What a Great Day!
I recently attended a lecture at DePaul University and was asked to speak to the class. The lecture was on a Wednesday morning and I was nervous as I had only one day to prepare myself for this speaking engagement. I arrived on time and was told to speak to the class right away.
The point of the speech was to highlight what structure needed to be in place for our fledgling organization to be successful. I told the class about some of my weaknesses, and that I am trying to be open to suggestions provided by others. I told them about our need to get volunteers to construct informational brochures and pamphlets to be distributed to the community. I stressed fact that organization is very difficult for me and that I really needed an organized and structured plan of how to get this organization off the ground. I added that I had been unable to get someone in the office to provide this support on a volunteer basis.
Finally, I emphasized why I felt this organization was so important. A large percentage of children have Dyspraxia, and there is very little help available in the United States. I wanted our organization to help provide others with support, information, and advice.
I detailed certain things I can’t physically do. I can’t go to more than one conference in a day because I tire easily, and get lost frequently. Trying to get ready and prepare the right clothes and shoes take a lot of time and energy as well. I did highlight my ability to speak from my own personal experiences and how I hoped that would help others and the organization. To sum up - after the sheer nerves and excitement over giving the speech, and giving the speech - would anyone contact me? Was my presentation ok? I got an email fromthe lecturer saying I did an excellent job! Someone from that class emailed me saying he had Dyspraxia and wanted to help. I must say this was a great day!
The point of the speech was to highlight what structure needed to be in place for our fledgling organization to be successful. I told the class about some of my weaknesses, and that I am trying to be open to suggestions provided by others. I told them about our need to get volunteers to construct informational brochures and pamphlets to be distributed to the community. I stressed fact that organization is very difficult for me and that I really needed an organized and structured plan of how to get this organization off the ground. I added that I had been unable to get someone in the office to provide this support on a volunteer basis.
Finally, I emphasized why I felt this organization was so important. A large percentage of children have Dyspraxia, and there is very little help available in the United States. I wanted our organization to help provide others with support, information, and advice.
I detailed certain things I can’t physically do. I can’t go to more than one conference in a day because I tire easily, and get lost frequently. Trying to get ready and prepare the right clothes and shoes take a lot of time and energy as well. I did highlight my ability to speak from my own personal experiences and how I hoped that would help others and the organization. To sum up - after the sheer nerves and excitement over giving the speech, and giving the speech - would anyone contact me? Was my presentation ok? I got an email fromthe lecturer saying I did an excellent job! Someone from that class emailed me saying he had Dyspraxia and wanted to help. I must say this was a great day!
Monday, September 10, 2007
Sad Times and New Beginnings
I suffered a great loss recently. My grandfather, Jack Schneider, died on August 9, 2007. Besides being a very loving and caring person, he was also one of my best mates in the world. Over the past two years, Jack struggled with ALS better known as Lou Gehrig's disease. The man I knew from childhood started to whither way as the condition took control of his whole body.
I flew to Florida for the funeral and was accompanied by my new and very beautiful girlfriend Sara. She dealt with my highly emotional state with grace and compassion. As we buried Jack, Sara held my hand. I was closing one chapter in my life (the loss of someone who was truly amazing to me), and opening a new one (the compassion and care of a beautiful young woman).
Losing Jack was especially hard to cope with because I had just returned from visiting him. One second I was chatting with him and the next, he was gone. Losing him was the most devastating loss I have ever faced. Gone was the loving man who said to me, “Warren you aren't disabled. You can do anything you want in life.”
Jack's confidence in me is something I want to pass on to kids and the families of kids who have Dyspraxia. He taught me that with determination, drive, and a good heart, people are who are just a bit unique can make it in life.
It has been hard adjusting to life without my grand dad, but I know he wanted me to continue working hard with the organization. I have been doing just that and I will now udpate you on new events at Dyspraxia USA NFP.
I decided it was time to get more connected with the non profit world in the city of Chicago. At first I was very nervous about making phone calls and going to selected events. But, I decided that in order to make progress with the organization, I had to try new things. At the beginning of September I did just that.
First, if you have Dyspraxia, the one thing you live on is instant gratification. I am finding out that its ok to ask for help, and I did this when obtaining the new accountant for the organization (Larry Acciari). Instead of just emailing random people I found on the computer, I asked my friends for suggestions about what to do. I needed to hire someone who would be good for the organization, not the first person who was available. Making sure someone could give me references and taking the time to check them out was important. Because I trusted the opinions of others with previous hiring experience, I did not give in to my need for instant gratification. I interviewed our new accountant and my consulted with my dad before making my final decision.
I must say I feel like i made the right decision and I am very happy with Mr. Acciari. He is always available, and he and his assistant have taken the time to learn about Dyspraxia so they know how to explain things to me. They tell me what papers I need to take to them and which documents need to be signed and where.
In memoriam of Jack Schneider 1931-2007 best mate, caring person and the man who instilled a lot of confidence in me until his last breath. He will truly be missed, and his heart and kind spirit will go on forever.
I flew to Florida for the funeral and was accompanied by my new and very beautiful girlfriend Sara. She dealt with my highly emotional state with grace and compassion. As we buried Jack, Sara held my hand. I was closing one chapter in my life (the loss of someone who was truly amazing to me), and opening a new one (the compassion and care of a beautiful young woman).
Losing Jack was especially hard to cope with because I had just returned from visiting him. One second I was chatting with him and the next, he was gone. Losing him was the most devastating loss I have ever faced. Gone was the loving man who said to me, “Warren you aren't disabled. You can do anything you want in life.”
Jack's confidence in me is something I want to pass on to kids and the families of kids who have Dyspraxia. He taught me that with determination, drive, and a good heart, people are who are just a bit unique can make it in life.
It has been hard adjusting to life without my grand dad, but I know he wanted me to continue working hard with the organization. I have been doing just that and I will now udpate you on new events at Dyspraxia USA NFP.
I decided it was time to get more connected with the non profit world in the city of Chicago. At first I was very nervous about making phone calls and going to selected events. But, I decided that in order to make progress with the organization, I had to try new things. At the beginning of September I did just that.
First, if you have Dyspraxia, the one thing you live on is instant gratification. I am finding out that its ok to ask for help, and I did this when obtaining the new accountant for the organization (Larry Acciari). Instead of just emailing random people I found on the computer, I asked my friends for suggestions about what to do. I needed to hire someone who would be good for the organization, not the first person who was available. Making sure someone could give me references and taking the time to check them out was important. Because I trusted the opinions of others with previous hiring experience, I did not give in to my need for instant gratification. I interviewed our new accountant and my consulted with my dad before making my final decision.
I must say I feel like i made the right decision and I am very happy with Mr. Acciari. He is always available, and he and his assistant have taken the time to learn about Dyspraxia so they know how to explain things to me. They tell me what papers I need to take to them and which documents need to be signed and where.
In memoriam of Jack Schneider 1931-2007 best mate, caring person and the man who instilled a lot of confidence in me until his last breath. He will truly be missed, and his heart and kind spirit will go on forever.
Tuesday, July 31, 2007
Travelling to Florida!
Hi all,
I promised I would give you an insight into my recent trip to Florida to visit with my Grandparents. Normally this should be a completely uneventful occasion, but as anyone with dyspraxia who reads this blog will know, that isn't the case for us!
As always, I was very nervous about the trip. I was concerned with how to get proper transport to the airport, remembering my tickets and how to navigate around the airports! I have come up with a little trick to make sure I don't forget anything, and that is just repetition. I count each pocket of my jeans over and over again - "left pocket wallet, phone, keys, check". "Right pocket MP3 player, tickets, check". I kept checking over and over again until I got to the airport!
After going through curbside check in, I moved fast worrying about how I would find my correct gate. Unfortunately, this lead to me leaving my boarding tickets at the gate... oh no! I was doing so well! Luckily one of the airline employees caught up with me and handed them over!
So, I make it onto the plane. What happens next? I left my phone on the whole time during the flight. I had accidentally forgotten to check my right pocket (seems my system temporarily failed) .
When we finally landed, I used a note I had written on my phone to guide me to the Local Transportation area of the airport. I also showed it to security who guided me to the correct location. I managed to then find a taxi. Instead of trying to explain to the driver where my Grandparents live, I called my Grandfather and let him talk to the driver and guide him in...!
What would I do without my trusty cell phone?!
Look out for my next update on Friday!
I promised I would give you an insight into my recent trip to Florida to visit with my Grandparents. Normally this should be a completely uneventful occasion, but as anyone with dyspraxia who reads this blog will know, that isn't the case for us!
As always, I was very nervous about the trip. I was concerned with how to get proper transport to the airport, remembering my tickets and how to navigate around the airports! I have come up with a little trick to make sure I don't forget anything, and that is just repetition. I count each pocket of my jeans over and over again - "left pocket wallet, phone, keys, check". "Right pocket MP3 player, tickets, check". I kept checking over and over again until I got to the airport!
After going through curbside check in, I moved fast worrying about how I would find my correct gate. Unfortunately, this lead to me leaving my boarding tickets at the gate... oh no! I was doing so well! Luckily one of the airline employees caught up with me and handed them over!
So, I make it onto the plane. What happens next? I left my phone on the whole time during the flight. I had accidentally forgotten to check my right pocket (seems my system temporarily failed) .
When we finally landed, I used a note I had written on my phone to guide me to the Local Transportation area of the airport. I also showed it to security who guided me to the correct location. I managed to then find a taxi. Instead of trying to explain to the driver where my Grandparents live, I called my Grandfather and let him talk to the driver and guide him in...!
What would I do without my trusty cell phone?!
Look out for my next update on Friday!
Tuesday, July 24, 2007
Birthdays and moving
Time to update on a few big things happening in my life! The month of July started with a big move for me. Well, not too big - I only moved up one level in my apartment complex but even that brought some challenges with my condition!
Even though the move was small, it required a lot of worrying on my part. I worried about how I would place things and how I would carry things. The anxiety, spatial concerns and depth perception really worried me also.Luckily, the night before the move I managed to secure some help. I spoke to a person who works in my apartment building and he agreed to help me during the move! For example, while moving the couch, he would come over and slap my left or right hand so I would know which one to use whilst carrying heavy objects. He would also help place my body in the correct direction to spatially get things through the door. Finally, he showed me how to open the door and where I should stand on my balcony.
I am all moved in now!
It was my birthday on 14th July. I had invited all of my friends to join me in a bar to help celebrate. I was very nervous about the day, thinking about whether anyone would even show up or if it would all go wrong! When I arrived, I realized I was the first one there and started to panic. Luckily, my friend Tim arrived quite soon after. He helped me by telling me to stand up and get ready to chat to all the guests who would be arriving. That important social cue helped me interact with all 25 guests who appeared at the party!
Unfortunately, at the end of the party I was very tired and decided to just leave without telling anyone. Evidently I worried a few people by my disappearance! That was definitely a lesson learned that night. I know now that when I want to leave, I should tell each of my guests that I am heading home, and thank them for their company!
Well, every day is a learning day for someone with dyspraxia! I hope to learn all of this by repetition, so hope not to make that mistake again next time!
I'll fill you in on my recent trip to Florida in the next few days. I will explain how I managed to get through the whole journey with minimal upsets!
Thanks for reading.
Tuesday, June 19, 2007
Hello, and welcome.
My name is Warren Fried. I would like to take this time to welcome you to my official blog! The purpose of this site will be to give you, the reader, a unique insight into the running of an organization with all its unique challenges through the eyes of a dyspraxic! The blog will aim to show you how I see the world with my unique view, what challenges I face, and how I cope through tough times!
In essence, this blog will aim to help guide parents, teachers and others by giving an insight into the daily life of someone with Dyspraxia. I will try to make it very personal and candid. I will try to point out ways in which I have learnt to cope with my condition, and which aspects I still find quite difficult.
Please enjoy my blog, and take this unique journey with me through the challenging path of running an organization and all the other social aspects and motor concerns I face daily!
Yours,
WF
My name is Warren Fried. I would like to take this time to welcome you to my official blog! The purpose of this site will be to give you, the reader, a unique insight into the running of an organization with all its unique challenges through the eyes of a dyspraxic! The blog will aim to show you how I see the world with my unique view, what challenges I face, and how I cope through tough times!
In essence, this blog will aim to help guide parents, teachers and others by giving an insight into the daily life of someone with Dyspraxia. I will try to make it very personal and candid. I will try to point out ways in which I have learnt to cope with my condition, and which aspects I still find quite difficult.
Please enjoy my blog, and take this unique journey with me through the challenging path of running an organization and all the other social aspects and motor concerns I face daily!
Yours,
WF
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