Excerpt from https://dsconnect.nih.gov/en/announcements/415-video-tutorials-available.html A new Down syndrome patient registry will facilitate contacts and information sharing among families, patients, researchers and parent groups. The National Institutes of Health has awarded a contract to More »
Disability.Gov has listed some great tips and resources to start the school year off right! - Reduced-Price/Free Breakfast or Lunch - National Dissemination Center for Children with - - Disabilities (NICHCY) Fact More »
Many children and even some adults who have Down syndrome are Non Verbal. A majority of the population has at best difficult to understand language and speech. Being a mom to a More »
First I want to apologize to my subscribers/followers. I have not been posting as much lately. There are a million reasons why, but the main reason is my family has to come first and More »
Every year around the globe on March 21st people celebrate the gift of Down syndrome. There are events happening, people are writing about it, blogging about it, and just sharing More »
“Get Developmental Care” is the title to an article published in the Wall Street Journal. The WSJ states “Many kids struggle with developmental problems at some point in their childhoods, and getting More »
This was nice to wake up to today. It was the first think I read when I took a peek at my messages while having my coffee. I am sure like myself More »
Since My Christopher was 3 years old I knew he was not your average child with Down syndrome. He was always in his own world, his communications were not emerging, and More »
The horror that took place in Connecticut at Sandy Hook is heartbreaking to say the least. I can’t even begin to imagine what those parents, that community are going through. The nightmares and the horrible images More »
Every three years the school system administers a psychological test on my son. On may children with developmental disabilities sometimes may be even more often than that. This week I am taking my son outside the school district More »
This is something that I think many parents are not aware of in their children with Down syndrome. It is however very common and worth discussing. My son is a perfect example More »
There are times that I can honestly say that I sit down and feel sorry for myself that I have been given this life. There are times when I can honestly say More »
Body Riverview girl with Down syndrome found in pond By JOSÉ PATIÑO GIRONA | The Tampa Tribune Published: October 23, 2012 Updated: October 23, 2012 – 12:17 AM » 2 Comments | More »
Before I head to bed tonight on this Halloween, and last night of National Down syndrome awareness month I wanted to through in a few of own personal thoughts. It has been More »
I wrote this 2 years ago but it all still holds true! Just remember you know your child and you know their limits. Also remember that just because something was ok last More »
Saturday we had our annual Buddy Walk in Panama City Beach. Thanks to Acton up With Downs Inc, They did a great job as usual hosting the annual walk!! This year we did More »
It has been a long time since I have read new research on Down syndrome. So I was happy to see this. I will admit that a lot of it is above More »
I know I haven’t been able to keep up with the 32 for 21 this year, but really I have a good excuse. Really!! Which brings me to the topic for today’s More »
October Means Buddy Walk Time!!! Team CJ Is Rocking To Raise Awareness For Down syndrome/ Autism Dual Diagnosis – 32 For 21
The Buddy Walk is an opportunity for anyone and everyone to walk — or support a walker — and raise funds for the Acton Up With Downs Inc Buddy Walk and the More »
I hear often about the transition that our children face when they come of age. I try not to think about it to much because that means that my baby is growing More »
I waited to write this blog for several reasons, but the main reason was I wanted to speak intelligently on it. To my surprise I am finding little information. It makes me More »
Several years ago I have a vision to help families with special needs vacation in a more realistic setting. The only problem was my lack of funding. I began working on a plans to More »
Over the past few weeks I have had a lot of people come up to me and ask me about my CJ’s new vest. So I thought I would take the opportunity More »
Bridging the Gap Within Communities In The Florida Panhandle – A Developmental Disabilities Collaboration Effort
Ove the past couple of months I have been revamping and growing Voices For Down syndrome. Let me start by reintroducing myself for those of you who are just joing my blog, More »
Becoming an Effective Advocate for your Child’s Education Pragmatic Strategies to “Navigate the System” – 31 March
Parent Workshop March 31, 2012 9:00 a.m. – 12:00 p.m. 12:30 – 3:00 p.m. Individual Consultation Messiah Lutheran Church 3701 West Hwy 390 RSVP- 769-5371 Becoming an Effective Advocate for your Child’s More »
Recently I have been involved with several situations in the Bay County area that supports special needs families. I have to say as a parent I am outraged at the lack of More »
There has been so many changes in my life since I quite working in Aug. It has been a challenge keeping up with my advocacy and this blog. One of the biggest things aside from spending time with my son is I have pursed my photography. Taking the photos is not time consuming, but the marketing is. It started out as a hobby and has become something I very much enjoy. Unfortunately it has taken me away from all this. Part of me feels that it is ok. I was beginning to feel a bit burnt out on advocating and sometimes it is ok to take a break. Part of me also felt like I was wasting my time.
It was not until a recent comment on one of my posts that I realized that the information of having a child not only with Down syndrome but with the dual diagnosis of Down syndrome and Autism is so needed by other parents. They including myself are struggling for resources, acceptance, and understanding.
So with that said, I will continue Voices For Down syndrome and you can expect a lot of changes before the first of the year. Please do not hesitate to comment and share on here and on my Facebook page. http://www.facebook.com/voicesfordownsyndrome
Have a great day!
A new Down syndrome patient registry will facilitate contacts and information sharing among families, patients, researchers and parent groups. The National Institutes of Health has awarded a contract to PatientCrossroads to operate the registry. The company has created patient-centric registries for muscular dystrophy and many rare disorders.
People with Down syndrome or their family members will be able to enter contact information and health history in an online, secure, confidential database. Registry participants will be able to customize their profile, update it online, and choose which information they would like to display, including reminders about their own medical care and general information about Down syndrome. They also will be able to compare their own medical information to that of other registrants in a confidential and anonymous manner. Click Here to read moreTweet
You are invited to the first ever virtual phone meetup hosted by Voices For Down syndrome. This is a great opportunity to talk with other moms, dads, and providers. Share your ideas, tips and resources. Just about anything! Each session will have a theme! We will do our best to stick to that theme! For the first session it will be a getting to know you type session. What do you want from a resource? What are you missing? How do you cope with the lack of support services? How can we help?
When: Wednesday, September 18, 2013
Time: 10:00 AM Central Daylight Time
Where: Phone 1-646-307-1300 Acess code 6674729
Please comment below if you plan to attend so I can ensure we have enough slots!Tweet
What an adventure it was to! We went on our first camping trip this past memorial day weekend! I was very surprised at how well my son did. I really shouldn’t be as he surprises me everyday, but I was. I had so many concerns about camping with him. How will he deal with the confinements of such a small camper? Will he run? Will the lock on the camper keep him in at night? Will he get to over tired? And so many more!
We made sure he had his comfort items. I would not dream of going anywhere with out them. He had his bubbles, his movies, his fidget toys, and he even had his flashlights!!
I am proud to say that my CJ did Great!!! We went to St. George Island State Park in Florida. Not to far from home just in case!
It was our first time camping in our restored 1966 Shasta and I was so excited. Come to find out so was CJ. Once we got the camper all set up, all he wanted to do was lay in his bunk and watch his movies! Ha! Here I was afraid he would not want to go up there!
I have camped most of my life! I love it! One of the things I like the most is going for long nature walks on the trails. I knew CJ was not going to be able to walk those distances so we brought our bikes! I had hoped that he would ride his, but he didn’t. So daddy had to pull him in the wagon.
Another thing that I love to do camping, and camping is just not the same with out is roasting marshmallows! We got the campfire going, found some great roasting sticks, and when I went to get the marshmallows someone had a mouth full of them!! So of course I got even more excited, thinking yay he like marshmallows he is going to love roasting them on the campfire. I was so wrong! All he wanted to do was poke the fire! When he finally took a taste of the marshmallow he did not like it! Which of course meant he was not going to eat the smores either. And I was right, he did not like those either.
So mommy whipped out the Jiffy Pop Pop Corn and that he enjoyed!!
It really was a great adventure. He slept through the night. Did not run off, and had mom and dads full attention! Just what he needed!
Since CJ has Down syndrome I was able to get a discount at the state park. All Florida State parks do provide this discount as long as you have proof of the disability. An no, just looking at them is not proof. I tried that!! You can find more about the fees for the disabled by visiting the Florida State Parks website. http://www.floridastateparks.org/thingstoknow/fees.cfm
I can’t wait for our next adventure! I know it will be over the 4th of July week, just have not decided yet where.
If you have any recommendation please let me know.
If you and your family are on the road with Down syndrome as well, please share with us. If you are camping around the state of Florida or south Ga then let me know.
The whole point of establishing this initiative is to not only learn from each other about our experience of traveling with someone who has Down syndrome but to also bridge our communities together.Tweet
Many children and even some adults who have Down syndrome are Non Verbal. A majority of the population has at best difficult to understand language and speech.
Being a mom to a Down syndrome child who is Non Verbal my heart raced today when I realized that I did not have adequate safety measures for him in the event of an emergency. While I was watching the tragedy in Oklahoma I could not help but feel as if I have not done enough to protect my son. What if he was in that situation? He can not tell people who he is, where he lives or who his parents are. So I will now before the end of this week have this resolved.
We have tried different measures in the past. I would tag his clothes. He has a wallet with a chain on it and in it are pecs pictures, who he is and our contact information. He fights to wear it because it feels funny to him in his pocket, but he will go to school wearing it tomorrow. I have tried ID bracelets, tattoos and dog tags, but my tactile defensive child will not tolerate those.
After listening to the horrible tragedy that happened in Oklahoma today with the tornado I can’t help but feel almost helpless on this issue. How do I provide my son Identification that he will leave on without freaking out so that in the event something happens at least he will have that.
Most days people would say my son is verbal. He can say words he is just choosing not to. It maybe a behavior issue but you put him in a stressful situation, or around people he does not know. He forgets how to talk. He forgets how to make the sounds. His brain almost freezes up on him and he then becomes completely non verbal.
So after years of facing this dilemma I would love to hear what you do for your child. Remember now. My son is tactile defensive, very stubborn, and limited language.
Here are some resources that I have tried in the past, some great Ideas but they just will not work for him at the moment. Maybe in time as he gets older.
http://www.etsy.com/listing/10901121/20-customized-pecs-autism-communication (similar to the wallet my son has)
So after years of facing this dilemma I would love to hear what you do for your child. Remember now. My son is tactile defensive, very stubborn, and limited language.
So for right now I am sticking to the Pecs wallet. If anyone has any other ideas, or what works for your child please Please share!! I know there are others out there in this same situation.
I have blogged in the past about how my son has Auditory Processing Disorder.
In simplified terms his brain does not process words heard they way it should.
Now I am not expert by no means and I am always learning. Tonight I came across one of the best and easiest to understand information on Auditory Processing I have yet to find. I am so excited to have found this that I just had to share.
I have skimmed through this Ebook and will be going to back to read it more closely. Oh did I mention that it is FREE!!!
Thanks to NeuroNet Learning http://www.neuronetlearning.com/ for putting this information out!
Here is the link to the FREE Ebook http://blog.neuronetlearning.com/activities-for-children-with-auditory-processing-disorder/Tweet
I thanked god this morning as we wake up to hear of yet another tragedy in our county.
Sometimes I will admit that it is hard having a child with developmental disabilities. It is hard sometime to know that he is not like all the other children in the neighborhood. But this morning when I awoke I thanked god again for my blessing; my angel. For he will never understand the evil and horrific things that are going on in our country right now.
I thanked god this morning that he is a ray of sunshine that brings hope to my heart every time he smiles at me, even though my heart aches for my country.
I thanked god this morning that his innocence is contagious to whom ever he meets. They to then can feel the sense of hope that I do when they look into they eyes of my son.
Our country is dealing with the aftermath of the terrorist attack on Boston, the explosion in Waco and the war that our services men and women continue to fight senselessly. This is a lot for children to hear, understand. Fears and worries can set in.
Our country is in a difficult state right now. I beg parents of typical children to please shield them from the news that is going on as much as possible, but don’t keep it completely from them. Talk to them, answer their questions as much as possible, but most importantly let them keep their innocence, and give them hope!
I thank you lord for my son each day. For the person that he is, and the childhood innocence that he has and will always have; that so many of our country’s children today are forced to lose to young.
Thank you for my Angel!
I want to express my deepest sympathy, thoughts, and prayers to all those in Boston that are faced with such tragedy As a native Bostonian It is hard to believe that such a horrible thing could happen.
Pray for Boston! Pray For America!
A week ago today my son pariticipated in the Florida Regional Special Olympics. I think I was more excieted then he was! This was the first time that he went to the regionals, and guess what???? He won!
Yay my CJ!
I could not have been prouder of him! To make it even better He took first place!!
I have to put out a special thank you to his Teacher. She has really made these Olympic games special for these kids. She takes such pride in each one of the them, and works hard so that they understand why they are participating. She also practices a lot with them.
If you are not familiar with the Special Olympics I encourage you to take a few moments and visit their website at http://www.specialolympics.org/.
It is not only a program for families with developmental disabilities but the volunteers that make it happen! I personally want to say thank you to you all.
Now here is a little video clip of my little guy running the 25meter and taking first place!Tweet
Every year around the globe on March 21st people celebrate the gift of Down syndrome. There are events happening, people are writing about it, blogging about it, and just sharing their amazing stories. Anything to get the normal population to just STOP, LOOK AND LEARN.
STOP, LOOK and LEARN about Down syndrome, why we celebrate this day, what makes these families so amazing!! What makes these angels even more amazing.
Let me share with you My Christopher!
My Christopher is a very loving child. He loves music, and dancing, and so many other things. Christopher is a very creative boy. It has taken me a while to figure out what his strengths are since he has such a diverse personality.
Lately he has been admiring mommy and his step dads photography hobby and following suit.
This is a picture of Christopher with his camera taking pictures in the park. He just has so much fun and really has an amazing eye!
This is an unedited picture that he took on our last outing! Pretty good for a little fellow!
This is something that he really enjoys! So of course we will continue to encourage it.
Now you have Stopped and looked. You learned a little bit about my Christopher and for World Down syndrome Day, 21 March I encourage you to continue to Stop and LOOK, but also you need to LEARN. Ask the person with Down syndrome what their favorite things to do are, ask them anything! I know they will be more than happy to share with you. I also think you will be pleasantly surprised that you will enjoy hearing it just as much!
Stop, LOOK, and Learn and ask the parents of these angels questions. Talk to them about their child! I know they also will be happy to share. Make it a point on this very special day to make these angels and these families know that they are accepted!!
Every day each one of these families and angels over come so many obstacles! They can share with you some of the most remarkable stories of courage, commitment, and perseverance.
So to celebrate WORLD DOWN SYNDROME DAY I ask that each one of you to
STOP, LOOK, AND LEARN!
When I first started Voicesfordownsyndrome it was by another name and after the birth of my son. I need to find a way to reach out to others, share what I was learning, and learn for myself all at the same time. I started out first with a small website just of information that I have gathered. I had hoped that something local in the form of a support group would come out of it. Then someone else had the same idea and our local support Acton Up With Downs was born. I was excited about this, finally someone to talk to but I felt I needed to keep going with the website.
My next growth spurt was from just a general website to blogging. You can view my original blog and past archives here http://downsyndromenwfl.wordpress.com/ . I was limited what I could do on that blog so I decided to purchase a web address and host. While in the process of doing all this I realized that another group had taken a similar name I had, and was becoming pretty popular just west of me. So after much thought I thought I would change it one last time. Voices For Down syndrome is what came about, and I believe I will be sticking with this one.
I still felt like I could make a difference and to me this still was not enough.
I am now a board member of our local Down syndrome support group and just getting started. I have a lot of ideas and ambition. I am really hoping to make a difference in our area here in Florida so please I am reaching out to you. If you are local and have a loved one with Down syndrome we really want to make a difference but need all the support we can get. Volunteers, community support, ideas, donations are all needed.
Voices For Down syndrome is not going away. I will continue to advocate for Dual Diagnosis as well as share my personal experiences. After several years of blogging and sharing I would really love to hear your comments on what has developed here on Voices For Down syndrome. And… like anything in my life, it is still a work in progress.
The horror that took place in Connecticut at Sandy Hook is heartbreaking to say the least. I can’t even begin to imagine what those parents, that community are going through. The nightmares and the horrible images that must play over and over again in minds of the children that survived must be overwhelming for them.
Those children have a long road ahead of them in dealing with this tragedy and the horrors that they witnessed. Children across the county may not have been spared either from this event. It has been on the news, radios, internet, people talking about it; even my son saw me shed a tear as I was reading about it online.
Many many times I wish my son understood certain concepts. Like you can not just walk out in the road silly you might get hurt! Or if you don’t wash your body you may smell. Simple things!! But this time I am grateful to the good lord that he does not understand what is going on in the world around him.
My older two were teens when 9/11 happened and they were both smart so it was easy to console them and talk to them about it. I can’t image having to explain such tragedy to an elementary child. Especially one that this horrible where so many children lost their lives.
I have heard several different times today about kids being scared to go to school! I was fearful of sending my son, but again thankfully he does not know or understand what happened so I did not have to face that. It can be hard sometimes, but when evil of this magnitude shows its ugly face. I am very grateful for the angel that I have.
I wonder though how children and / or adults with developmental disabilities are dealing with this tragedy and understanding it. How do you talk to them? How do you console them when they become upset or fearful? .
If you have a story please feel free to share below.
My heart, my prayers, and my tears to all those that lost a loved one, and to the community as a whole in the aftermath of such evil. To the victims, those innocent children and brave teacher, may they rest in peace now!Tweet
Every three years the school system administers a psychological test on my son. On may children with developmental disabilities sometimes may be even more often than that. This week I am taking my son outside the school district for another round of tests and I am question why from so many. My answer to them is why not! I want to understand my son for all that he is so that I can properly advocate for him for the services that he needs. My gut tells me one thing but without the paperwork from professionals I will get no where .
So First and foremost I was not happy with the results of the first round of tests. He was having a bad day but the school psychologist insisted on doing it anyway. His results on all where low, his placement in school was great but I still was not satisfied and still wanted more answers.
Every child with Down syndrome is different, and they all range in different levels of cognitive and developmental abilities. After 10 years and seeing little to no progress in certain areas with my son I feel that there is something blocking it and I want to be sure that I have covered all possibilities. If I don’t then who will!!
I did some extensive research and there is a lot of information out there on Psychological tests with children with Down syndrome. Kennedy Krieger Institute , intelectualdisability.info and this one http://www.down-syndrome.org/reports/313/ ; Just to name a few!
So this week we began our visits with a local area Developmental Psephologist who is known in the area to be one of the best. CJ was not to compliant and really was off in CJ land most of the time. We spent that appointment filling out all the question-airs and me talking with the Doc.
Today we had another visit and I had to fill out yet another questioner but this time it was more related to Autism. I can see the docs brain just smoking when he is trying to communicate with CJ and he is just being stubborn and not answering him. He made some very good observations today and on Tuesday I go back to get his report.
Some parents might not agree with what I am doing, and that is Ok, Really!!
I am doing this for my son and so that I can better advocate for his needs. If I don’t know what those needs are then how can I be the best advocate for him!!
I really don’t know what to expect from the results but I am glad i did this. I may not have the answers that i want, but then again I might! What ever I can do to get my son speech, OT, and Pt therapies I am going to do it! This child has been without help outside of school for 5 years and he really should be further along then he is.
Don’t be afraid to reach out to areas you are not familiar with. No one is going to do it for you, you as the parent have to take that initiative. If your instinct is telling you something is not right! Then guess what, you are probably right!!
Cross your fingers and your toes, and I will update on this next week!!
This is something that I think many parents are not aware of in their children with Down syndrome. It is however very common and worth discussing. My son is a perfect example of flat feet and the abnormalities in the feet of kids with Down syndrome. Up until recently we were told not to worry, it is not that bad. Well now it is beginning to slow him down. So it is time to address it. I would never have dreamed of waiting so long but my son is also very tactile defensive. Without proper therapy it has been a challenge to let anyone near his feet. I have been working hard with him though, playing little games with him about his feet, and I think he is better but it is still going to be a challenge. His feet are becoming worse and he is going through shoes very quickly. You can tell by the way he walks and the way his shoes are wearing down that there is something wrong. What causes flat feet in children with DS? Individuals with DS are at risk for foot problems due to hypotonia and ligamentous laxity. Both characteristics contribute to joint hypermobility. This means the foot bones are not properly stabilized and aligned for standing and walking. Without taut ligamentous support, the heel tilts inward and the surrounding bones follow. When the inside borders of the feet collapse to the ground, it gives the appearance of no arch (see photo). The degree of flat feet varies from person to person. If it persists without treatment, the child may have further ankle and joint deformity. Long-term use of this standing and walking pattern will lead to pain. We took my son to see the orthopedic and he x-rayed both his feet. He did say that his feet were significantly flat and were rotating in. The doctor also stated that since his feet were not hurting him the only recommendation that he has is for some really good shoes with good arch support. He stated that there is a surgical procedure they can do to tighten the ligaments. This can be a painful surgery and if he is not hurting why put him through that. This doctor who comes highly recommended did not even suggest therapy for him. He said that there was a lot of controversy on this subject between therapists and the orthopedic. So for now we are going to take his advice. Th doc did make sense in certain areas. My concerns though is how he is beginning to slow down. He is not as active and I find him taking every opportunity to take his shoes off. I also have mixed thoughts due to the literature that I have come across in doing my reasearch. Some state that it is necessary to receive therapies, lifts, sometimes even braces. Then others like this doc state that good supporting shoes are all you need. So for the time being we will go with the good shoes unless my son complains otherwise or until we can resume physical therapy. Ways To Strengthen The Ankles & Develop The Arch It is suggested that a few exercises/ activities can help develop tendons, muscles, and ligaments. Of course, I don’t think these exercises are a guarantee that an arch will develop, but if it will improve muscle tone in the legs and feet, I’m all for it.
- Walk barefoot on soft uneven surfaces – Sand on the beach is a good example if you live near a beach. Since we do we take every opportunity to let him walk on the beach.
- we can create soft uneven surfaces indoors using blankets and pillows or a bed mattress on the floor. Walking barefoot on the grass is also an option .
- Walk with shoes on both level and uneven hard terrains, such as the driveway, gravel road, or rocks.
- Pushing a weighted toy/ object – This requires him to push-off more with his feet to move forward. A
- Activities where he needs to tiptoe and maintain the position for a few seconds at a time.
Special Shoes? Custom shoes, arch supports, or braces prevent flat feet from worsening and alleviate pain (only in cases of severe flat feet) but they don’t help develop an arch or correct a problem. Whether CJ needs orthotics or not remains is irrelevant he still needed arch supports and hopefully, the off-the-shelf kinds will work just fine. Shoes with a flexible sole are recommended for kids learning to walk. For CJ we went with New Balance because of the significant arch support they had. Plus they came in wide. The cheap brands that you might find at Wal-Mart or other stores are not recommended. Stride Rite is another brand that was recommended. I would love to hear your thoughts on this. Does your child also have issues with Flat Feet and Ligamentous Laxity ? Some of the resources that I cam across are http://www.oandp.com/articles/2011-04_01.asp – This article agree with providing the bracing support http://www.dsnetworkaz.org/PDF/PREP/part_ix.pdf - This documentation was written for educators, but has some amazing information in it. Like some exercises that you can do at home to help with Hypotonia http://ndsccenter.org/resources/general-information/ds-news-articles/how-to-treat-flat-feet/ – National Down syndrome Congress also support external devices for support in the feet.Tweet
There are times that I can honestly say that I sit down and feel sorry for myself that I have been given this life. There are times when I can honestly say I wonder how much more I can deal with.
My son is healthy, handsome funny, and so much more. He is smart and is just all around amazing. I am blessed that he is all these things and more. There are many families out there that are blessed with a special child yet there lives are so much more challenging, and sometimes they may even lose that child to the disorder or illness.
I came across a rare disorder today that I had never heard of and reading this mothers story and the story of other children I could not help but feel my heart-break for them, and yet feel at that same time how blessed I am for my son regardless of any hardships we face.
When I come across something that touches me so deeply I feel the need to share it. Like many of you we advocate on a daily basis for Down syndrome and Autism, but we are all families touch in one way or another by these amazing angels.
I came across a mothers blog today and the first thing that I saw was the picture of this beautiful baby boy. He looked ill in the picture so my curiosity got the best of me and I had to know what happened to him. The heartbreaking story, the struggles of this mother and the amazing strength she has touch me.
http://randycourtneytripproth.blogspot.com/p/debra.html – Is the blog of an amazing mother who journeyed down the path with her son and EB. Please visit her blog . I know it will touch you as it did me.
Epidermolysis Bullosa (EB) - is a rare genetic disorder that is painful and can lead to disability, disfigurement & early death. There is no cure or treatment today. EB makes the skin so fragile that the slightest friction causes blisters and skin tears. The eyes, mouth, throat and other internal organs are also affected.
For More Information on EB visit www.debra.org – The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA), is the only national non-profit dedicated to funding research and providing services and programs for those with Epidermolysis Bullosa (EB) – “the worst disease you’ve never heard of.”Tweet
Body Riverview girl with Down syndrome found in pond
By JOSÉ PATIÑO GIRONA | The Tampa Tribune
Published: October 23, 2012
Updated: October 23, 2012 – 12:17 AM
» 2 Comments | Post a Comment
Deputies searched on horseback, with police dogs and from helicopters. Teachers and janitors frantically opened lockers and peered into every closet at Rodgers Middle School.
They all were looking for a 5-foot, 90-pound, 11-year-old girl with Down syndrome and black pigtails who walked out of a crowded school gym and disappeared.
Less than six hours later, they found the body of Jennifer Caballero in a pond near campus.
More links to the story
When I read this I was more than just saddened for the family. I was furious!! I also began to count my blessings and thanked the gaurdian angel that has watched over my son over the years.
My son has wandered off in the past, and still has the tendency to do so.
It does not take much for something to catch his interest and for him to go running after it. He is also very quick! A few years back we had a difficult time with him wandering off, and several times the angels were looking out for him.
It angers me that 6 teachers and a school campus could not contain this little child.
How can our school systems continue to fail these children!
From what I understand this child had just transferred to this school, she had very little communication skills, and from what the article states she was on sensory overload and was hiding under the bleaches. So why was not one teacher assigned to work with this child when she came to the school??? She should have had that one on one aid? I am tired of hearding that they don’t have the money either!!! Not an excuse!!!
I don’t know this family, nor do I know the child’s situation, but I do have a lot of questions. Did the family know how to adovacate for their child? If not did the state step in and help? Was she receiving any services to address some of her behaviors? Did the family even know where to turn for services?
The reason I ask these questions because we have got to quit pointing the finger at just the schools, and hold the state accountable!!! If this family had someone assisting her in advocating for her child, she may have had a one on one aid when she transferred to the school! There are just some families out there that just don’t know how to use the system that is in place, and it is up to us, those that do; to stand behind these families whenever we can.
This is not the first incident in this district. Something obviously needs to be done to stop this madness.
I don’t claim to know the whole story, nor do I live in this district. I do know what it is like to send my child to school with fear that he may wander off and the teachers are not watching him!
I do know what it is like to have my son come up missing and fear the worst!
Children with Down syndrome and Autism are easily distracted. They need to be watched constantly. These teachers that were watching this little girl should have known that. They should have never let her out of their sight. They are definitely responsible, but they most likely also lacked the proper training, and information as to this child’s behavior.
If you are a parent with a little one with Down syndrome and you do not know how to advocate for that child. Don’t assume the schools know what is best. You know your child better than anyone, and you must be the one to educate the school staff about your child. If you do not know how then please reach out to your local support group, or organizations and ask for help. That is why they are there!!!Tweet
Our thoughts and prayers go to to all the people in the North East and Mid Atlantic States that are affected by Hurricane Sandy. Two of my children are both up there so I have been keeping track of the situation.
I pray that each one of you took the necessary precautions for your family and are now in a safe place.
When it comes to children/adults with Down syndrome or other Developmental disabilities we need to keep in mind that they deal with crisis issues a little differently than a typical person would.
PTSD from an event might not show it’s ugly face immediately after an event. It may take days or longer before it surfaces. So even though Sandy will blow threw your area in a matter of a few short days, the event itself will linger on much longer in the eyes of your loved one with Down syndrome.
There are numerous resources on the internet to help you understand more about the effects of a natural disaster on them. I will post some links later.
There are few things I would suggest during the storm.
1. Try to limit the amount of news about the storm that your child/adult with DS watches. They more they see the more impact it will have on them.
2. Let them help! Let them be the keeper of the flashlights or something. Anything to make them feel important, and take their mind off their fears
3. Watch for signs of distress and do your best to stay calm yourself.
After the storm, you need to be aware of changes in behavior at home and at school, eating habits, and anything out of the norm. Like I mentioned this may not be noticeable at first, but if there is some type of Post Stress going on it may not be visible for days, weeks, or even months after the event.
If you do notice signs that something is not right then act on your insticts. Talk to their doctor, a school counselor, or even a therapist. You can also seek out your local DS groups and utilize their support networks as well.
I know it is a short list, and I know it is little comfort in the time of such an event as Hurricane Sandy. Know that Downs community across the nation are keeping you all in our prayers.
If anyone has some great resources on this topic, please feel free to post them!Tweet
I wrote this 2 years ago but it all still holds true! Just remember you know your child and you know their limits. Also remember that just because something was ok last year does not necessarily mean it will be ok this year! Children grow and change and you need to keep that in mind when planning your holiday Tricks and Treats!!!
Over the years I have figured out what works best with my son during the Halloween holiday and I wanted to share them with you.
1. First I try to keep him on his routine as much as possible. If his bedtime is 8:30 then even on Halloween, he will go to bed at that time.
2. As tempting as it is to attend all the community functions, and parties this can cause undue stress. Limit the number of activities that your child does. Don’t try to attend them all.
3. Pay attention to your child’s reactions to costumes. If they don’t like wearing hats, or things on their faces, then don’t force them to wear a costume that has them. As tempting as it is to buy the cutest and coolest costumes, you need to keep your child in mind,Don’t even put yourself in that situation. Try to find a costume that you know your child will be comfortable wearing.
4. If you are decorating do it slowly over time to avoid any sensory overload.
5. When out trick or treating keep your expectations down. You child will not be able to go up to every house, they may quit early on. Don’t push them, usually there is underlying reason. I know with my son it is all the commotion and noise from all the excited children. When he is done he sits. .
6. Incorporate sensory activities into family functions. What better sensory activity could there be than carving a pumpkin! The gooey, slimy pumpkin guts, the rough textured skin, the aroma of a freshly cut pumpkin, and the glowing grin on the finished Jack O Lantern.
7. It is ok to say “no” to things that you feel my cause stress or may frighten you child.
Remember, you know your child best. You know there limitations and their challenges. It is Halloween and they deserve to have fun to! So if Johnny wants to dress up as a bunny but he is 15 years old well if that is what he wants to do then let him. You can only encourage otherwise! They have their own opinions, and as we all know to well DSS (Down syndrome stubbornness) will kick in full force if you say no to many times. Just keep them safe, and everyone have fun!!!
Saturday we had our annual Buddy Walk in Panama City Beach. Thanks to Acton up With Downs Inc, They did a great job as usual hosting the annual walk!!
This year we did a first for my CJ and we put a team together. Team CJ was walking to raise awareness for the dual diagnosis of Down syndrome and Autism.
It really was a great day! Even though My CJ has difficulties with all the people and was not very cooperative I think he still had some fun! If you want to see more pictures you can view them on my Facebook page http://www.facebook.com/voicesfordownsyndrome.com or the Local support group Acton Up With Downs, Inc. Facebook page http://www.facebook.com/actonupwithdowns
It has been a long time since I have read new research on Down syndrome. So I was happy to see this. I will admit that a lot of it is above my comprehension but it does give me hope.
Understanding how the inner working of people with down syndrome can be confusing, and intimidating to most. There is not law that says you need to understand every single thing. What you need to do though is become familiar with the challenges that these people face as you raise your precious angel.
This research discusses a lot of different variables from diet to Alzheimer’s. I encourage you to read this research. The study below was just published this month – October.
Current Gerontology and Geriatrics Research Volume 2012 (2012), Article ID 179318, 11 pages doi:10.1155/2012/179318
Copyright © 2012 Gavin Tansley et al.
Over the past 15 years, insights into sterol metabolism have improved our understanding of the relationship between lipids and common conditions such as atherosclerosis and Alzheimer’s Disease (AD). A better understanding of sterol lipid metabolism in individuals with Down Syndrome (DS) may help elucidate how this population’s unique metabolic characteristics influence their risks for atherosclerosis and AD. To revisit the question of whether sterol lipid parameters may be altered in DS subjects, we performed a pilot study to assess traditional serum sterol lipids and lipoproteins, as well as markers of sterol biosynthesis, metabolites, and plant sterols in 20 subjects with DS compared to age-matched controls. Here we report that the levels of nearly all lipids and lipoproteins examined are similar to control subjects, suggesting that trisomy 21 does not lead to pronounced general alterations in sterol lipid metabolism. However, the levels of serum brassicasterol were markedly reduced in DS subjects.Tweet
October Means Buddy Walk Time!!! Team CJ Is Rocking To Raise Awareness For Down syndrome/ Autism Dual Diagnosis – 32 For 21
Last year alone, over $9.5 million dollars was raised nationwide for local and national education, research and advocacy programs through the Buddy Walk program.
I am asking you to Buddy Walk with me — either by joining my team or by sponsoring me — to benefit local programs and the national education, research and advocacy efforts of the National Down Syndrome Society. Your Buddy Walk contribution will help strengthen our ability to serve the individuals with Down syndrome and their families impacted by this genetic condition.
Down syndrome and Autism, A dual Diagnosis that is overlooked and misunderstood. Help us raise the funds to further the research and support for those that are affected by this dual diagnosis.
How far we walk is not as important as why we are walking, and how much we’ll make a difference in the lives of all individuals with Down syndrome and their families.
Visit Team CJ and Register To Walk With Us!!! http://buddywalk.kintera.org/faf/search/searchTeamPart.asp?ievent=1017865&lis=0&kntae1017865=032A9C6B331A4391B63CC34A1C6E6262&supId=0&team=5167355&cj=Y
To Learn More About Acton Up With Downs The Panama City Beach Down syndrome group that sponsors the Buddy Walk evey year visit www.actonupwithdowns.org
Thank you for your supporting the 2012 Panama City Beach Buddy Walk.
Check out some of our pictures from previous years buddy walks!!
I waited to write this blog for several reasons, but the main reason was I wanted to speak intelligently on it. To my surprise I am finding little information. It makes me wonder if I am truly understanding the situation. I want to reiterate my disclaimer. I do not claim to be a medical professional. I am a parent advocate and these are the perspective views from a parent.
Another reason was my frustration on the subject. it is hard to advocate when your emotions are running a muck. So I had to first get those under control as best as possible.
Let me first share with you my experience, then please feel free to add in with your comments. I will add any updates to this topic as it begins to become available. Don’t forget you can always follow me on Twitter for up faster updates @trisomy21online.
It was time for me to renew my health insurance for my son this month and as I was reading the updates I noticed that it specifically stipulated that Speech, OT, PT, and ABA are available. For those with Autism though there is not cap on the number of treatments.
Now I know we have all heard in the news about the ABA for Autism, but yet I don’t hear anyone speaking on behalf of the DD community. Children with Down syndrome can have various degrees of disabilities and as many of you know can benefit, and need most of these services. Currently my son needs speech, OT, PT,. and has had ABA in the past. His insurance will only pay 30 hours a year for combined therapies. To my knowledge that is pretty standard across the board.
Ah, but here is the kicker!! Since my son is Dual diagnosed, once I provide that clinical diagnosis of Autism, he will get unlimited!!!!! Oh wait, he is over the age of 6!! He must have outgrown his disability!!!!
To even put a separate stipulation, rider, what ever you want to call it in an insurance policy and limit it to only one disability to me is discrimination. The last time I knew ASD was considered a developmental disability. So why exclude the others? Down syndrome, Pra Willie Syndrome, and more. It doesn’t make sense.
I apologize for the sarcasim, but as a mother I am frustrated with this whole thing. I keep hoping it will get better and one day he will get the support he needs but it continues to get worse. I am not saying that children with Autism do not deserve these unlimited services but they are being singled out and leaving a lot of deserving children behind.
I agree that there are some good things that are coming out of all the changes with the health reform, but at the same time we continue to have children left behind.
What should it matter what the disability is. If a child or adult needs those therapies then why should we exclude them or limit them because they do not have one particular label or are over a certain age. Children with developmental disabilities do just out grow them at the age of 6.
I have to be a parent first, so I will get that clinical diagnosis, but my fight is for those with Down syndrome. I feel we are being discriminated against!
I heard someone say that it is because of the soaring numbers of those with Autism! Well…. If women would stop aborting babies with Down syndrome, we may have numbers that high if not higher.
But the point is, it should not matter!!!!!! A child with special needs regardless of the diagnosis should not be discriminated against and be offered and provided the same and equal treatment and benefits of others with special needs.
Children with Autism are in the limelight for health insurance while our children are being left behind. All we here about is the prenatal tests, and like you I am against them.
The National Down syndrome Congress as put a position on just the very topic. You can find it here. http://ndsccenter.org/about-ndsc/position-statements/ According to the NDSC ”People with Down syndrome have been and continue to be discriminated against with regard to access to health insurance, solely on the basis of the diagnosis of Down syndrome and without consideration of their individual health status or health histories.”
I know I am not alone, and I am asking each one of you to please start speaking out!
Please excuse us while we are still growing. We are working on adding some training, increase in resources, new logo, and possibly a new name. Please check back often as I am working very hard on getting this project to where it needs to be to support our families in Northwest Florida.Tweet
Special Needs Require a Special Disaster plan. It is your responsibility to establish a family emergency plan. Local emergency response teams get busy during a large disaster event such as a hurricane. Most state and local officials encourage citizens to be self sustained for at least the first 72 hours.
For those family’s with a special need family member this requires additional planning. Waiting for the storm or emergency to be knocking on your door is not the time to begin your preparations. Be smart and plan ahead. An emergency can strike at any time and any place. You do not need to be in a state of turmoil when disaster strikes. Calmness and confidence can be yours when you properly prepare yourself ahead of time.
During the day I spend a lot of my time advocating Disaster Preparedness, as a response coordinator. I have seen what turmoil people go through who did not prepare. As a parent of a special needs child I have become aware of what is needed to prepare for an emergency with a special needs family member.
I want to quickly share with you some quick tips and ideas that will help you create your family emergency plan.
If your child or family member is on medication this is one of the biggest priorities. Be sure you have a list of all medications, dosage, and the Dr who prescribed it. If an evacuation is ordered you will need to have extra medication available. Most pharmacies will allow an early refill on medication with the onset of a large scale disaster such as a Hurricane. Don’t wait on getting these filled.
Have all paper work needed ready to go in a grab and go box. All of us that have special needs family members know how important accurate record keeping is for many different reasons. Your disaster plan should include insurance information, policy numbers, and how to contact them. From IEP’s to medical some of the information just can not be lost. There are small file boxes that you can get at your local stores that are inexpensive and small enough to grab and go.
For children with special needs keep in mind that most of these children weather it be Down syndrome of other wise are routine orientated. Having an emergency or having to evacuate is a huge disrupt to their routines. Be sure to have favorite items, toys, books, ect. I find portable DVD players are a god send. Be sure to have plenty of batteries. If there is a favorite calming snack that they like be sure to have plenty on hand. Be prepared your self to expect behavior changes.
Each family member should have a go bag with these comfort items in them. For my son I have two. One is for necessity items, such as food, medication, clothes. The other one is for his comfort items. Music, DVD player, his favorite toys and blankets. I use old school backpacks and lunch boxes for his grab and go bag. This gives him a sense of security because they are familiar items.
For those family members that have devices and equipment be sure you have the information for those items and if you have spare parts be sure to pack them as well. At least have them available to be able to pack and go at a moments notice.
Most states have a Special needs Registry.
Florida Division of Emergency Preparedness is Florida’s one stop for all your emergency needs before, during and after a storm or event.
The American Academy of Pediatrics (AAP) offers a variety of resources for families and children on disaster preparedness and other health and safety topics – http://www.aap.org/disasters/families.cfm. See also the AAP policy statement on Disaster Planning for Schools (2008) – http://pediatrics.aappublications.org/cgi/content/abstract/122/4/895
The Council for Exceptional Children has published an article entitled Help Students Cope with Fear and Feelings Following Disaster (2005). It includes a section on special care for students with disabilities and strategies to help students with specific disabilities – http://www.cec.sped.org/AM/Template.cfm?Section=Search&template=/CM/HTMLDisplay.cfm&ContentID=3999
The Florida Institute for Family Involvement has published a guide entitled Disaster Preparedness for Families of Children with Special Needs (Retrieved March 2006) to help families of children with special needs be prepared in the event of an emergency, disaster, or acts of terrorism. Although it is Florida oriented, much of the information is useful for all families and children with special needs – http://www.fifionline.org/resources/disaster_english.pdf (PDF: 6,871kb)
The National Child Care Information and Technical Assistance Center (NCCIC) has gathered examples of a range of approaches states have taken to develop/implement emergency preparedness plans for early childhood programs – http://nccic.acf.hhs.gov/poptopics/disasterprep.html (posted January 6, 2010). NCCIC also provides links to resources for adults working with children who have experienced traumatic events – http://nccic.acf.hhs.gov/poptopics/disasters.html
The National Association of School Psychologists (NASP) has resources available to help children and youth cope with traumatic events – http://www.nasponline.org/resources/crisis_safety/
ZERO TO THREE has resources to support parents and caregivers in helping infants and toddlers cope with and recover from traumatic and stressful experiences – http://main.zerotothree.org/site/PageServer?pagename=key_disaster&AddInterest=1142Tweet
Over the past few weeks I have had a lot of people come up to me and ask me about my CJ’s new vest. So I thought I would take the opportunity to share on here as well.
Children with Down syndrome can often have what is called Sensory Processing Disorder, or also known as Sensory Integration. This is especially true for those with Down syndrome that also have Autism.
Deep Pressure and Weighted Vests can be highly beneficial to some children with autism, Sensory Processing Disorder, ADHD and other neurological disorders. Based on the sensory integration technique of deep pressure providing the child with unconscious information from the muscles and the joints, the added weight or pressure may help the child calm down and better integrate sensory information. As a result, the child may become more organized, and improve in their ability to concentrate on play, learning or eating.
Generally, children who are easily distracted, hyperactive and lacking in concentration respond positively to the additional weight the clothing, blankets and accessories provide.
Weighted vests are often used at night to give the child a sense of security. When we first began using this vest on CJ, it was to see how he responded, if he would wear it all. Then we notices that he was wearing it every day. I can tell by the way he act that he think, hey this thing is cool!! He loved it! Now he will not leave the house to go to summer camp with out. It gives him that sense of security.
The vests that you can buy are just plain vests. Nothing special about them except the weight of course. There are some out there that you can purchase that are stylish, but you will pay a good penny for them.
CJ’s vest started out with a simple kids fishing vest. It caught our attention with all the pockets on it. CJ is one of these kids who has to fidget with something all the time. Perfect to keep some of his little fidget items with him always. CJ also carries around a communication picture wallet, that has his name, and other emergency information in it. It works perfect with the vest. It has a pocket that it fits in, and a loop to clasp it on to. He never looses it!
Once he started loading up his pockets with items it made the vest heavier thus giving it weight. Now I will admit I am sure it does not work just as well as the ones you can buy that are developed especially for this purpose. But I will tell you I have seen a change in him. Especially with compliancey, and his language. One of CJ’s sensory issues is Tactile processing. By allowing him to have different items with him at all time I feel we have hit the jackpot!!
So know that we know it is benefiting him, we are in the process of getting some patches, and some pins to make it look even cooler!!! Even Mcgruff The Crime Dog thought so!!
After several long weeks around here it made me realize that I don’t take time out for myself. That I was experiencing caregiver burnout.
Caregiver burnout refers to a condition in which an individual/caregiver grows less and less sympathetic to a particular circumstance over time. Because of the condition, individuals are at risk for depression, a sense of hopelessness, high levels of stress and anxiety, and a negative attitude in general.
- A sense of ongoing and constant fatigue.
- Decreasing interest in work.
- Decrease in work production.
- Withdrawal from social contacts.
- Increase in use of stimulants and alcohol.
- Increasing fear of death.
- Change in eating patterns.
- Feelings of helplessness.
Caregiver burnout is often felt in the special needs community by those providing care to the ones we love with a disability. It frequently occurs among Parents, therapists, teachers and counselors just to name a few .
There are ways to avoid compassion fatigue from the constant demands and needs of caring for your loved ones.
- Take some time off.
- Meditate, devotion
- Learn to say no
- Typically those in a season of compassion fatigue tend to try to do more, only to accomplish less. Let’s admit it: as caring, loving people, whether parents, caregivers or advocate, we are wired to care; and good easily falls into caregiver burnout if we fail to practice basic disciplines of self-care. You are the most important person in your life. You must first take care of you and your sense of wellbeing by taking positive steps to combat caregiver burnout.
- Prayer and meditation
- Healthy living
- Sleep and rest
- Maintain balance: work hard, play hard.
- Cultivate hobbies and interests outside of caregiving or advocacy.
- Create a circle of support: family and friends.
- Just say no: practice the art of self-management.
The very first step in dealing with Caregiver burnout is developing an awareness and acknowledging it is real. Caregivers, parents and advocate, teachers, and other disability workers involved in continuous direct care of our loved ones with Down syndrome or other disabilities; day in and day out are very much at risk. There is a high cost to caring, which includes physical and emotional toil on the one providing care. We must be proactive by balancing a high focus on self-care and being dependent on where ever we get our strength from. It may be our faith or it maybe another loved one.
Some of my personal regimes in preventing compassion fatigue is obviously this blog/website. It is not the content that gives me the uplift from a sense of fatigue, but it is all the computer geeky tech stuff that does it.
I am also an armature photographer (I am starting a new blog soon for my photography, I will keep you posted). I love taking pictures especially of wildlife and my little angel. Exercise is probably the best. I love to walk, and I find that is the best thing I can do to clear my mind and my spirit.
So what do you do to prevent caregiver burnout?
Leave a comment and let us know your tips!!
Excerpt For Prudential.com —The Prudential Insurance Company of America is proud to be working with the National Down Syndrome Society (NDSS) to provide information and services to families who have a loved one with Down syndrome. The services are offered through the Prudential Special Needs Solutions…For All Ages® program.
Established in 1979, the National Down Syndrome Society (NDSS) is a national advocate for the value, acceptance, and inclusion of people with Down syndrome. According to NDSS, Down syndrome is the most common genetic condition and affects one in every 733 babies born today (Prudential Press Release, 8/16/2010). In fact, more than 400,000 people are currently living with Down syndrome in the United States (Prudential Press Release, 8/16/2010). Down syndrome — first officially identified in 1866 by English physician John Langdon Down — is present when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of fetal development and causes the characteristics commonly associated with Down syndrome. Learn more about the National Down Syndrome Society. Prudential is not affiliated with National Down Syndrome Society. For complete story click here http://www.prudential.com/view/page/public/16821Tweet
After seeing some of the comments on this video and throughout the day on the Internet I am appalled at this county. It is disturbing to me that so many people do not get how using the Rword can be so hurtful to someone with developmental disabilities and those that love them. This is not a surprise to me, it is just upsetting.
As a parent with adult typical children we have battled this since their brother was born. Using the word is a habit that our children learn from other children, and from parents themselves. It can also be broken just like any habit can. That is exactly what I did with my children. I constantly reminded them that no matter what context you are using the word it hurts and is disrespectful. Eventually they got it!!!!
It is disturbing to me that our younger generation is so under educated that they do not see the cause behind ending the Rword. As a parent I do a lot of research. I get so angry at the stuff I see and most of the time it is younger children, teens, young adults using this word. I don’t go seeking it out but instead of what I really need to find I is kids joking around calling each other retard. Try it for yourself, do a search.. Search Google, Twitter, You tube. It is not just on the Internet either. We hear it in our schools, in our neighborhoods, in our work place.
Today a lot of awareness was being spread about how the word retard offends and hurts those with developmental disabilities. It is a label that has been used and is no longer excepted from the those with the disabilities. Education about the hurt that this label can cause is the only way to get people to break the habit of using the word.
Today a great mom made a video of her son in hopes of raising a little awareness about the R-word. She has done a great job and her little guy is amazing. Just like my son is absolutely amazing! Please take a moment if you are reading this and share with your family, your kids, or your colleagues to think before they use that word.
If you don’t get it, why this is such a big deal I challenge you to spend a little time with someone who has a developmental disability; Someone with Down syndrome. I promise you that you will think twice before you use the word.
Please help this community and when you hear someone using the word just ask them politely to not use it any more. If they ask why then show them!!
Help us Help you to break this habit of using a word that hurts so many!!
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Recently I have been involved with several situations in the Bay County area that supports special needs families. I have to say as a parent I am outraged at the lack of support I have seen from community members, services, business, locals, etc.
These families in this county are running out of options and funds to provide the quality of life services to their loved ones that they deserve. One facility even closed their doors on Friday due to lack of support from families, and the community. This should not be happening!!!!! This is our neighbors, our business, and our town that we live in and support everyday by working, paying taxes, utilizing the schools.
Now let me tell you what really has my blood boiling this morning.
So I just found out that there is an event coming in April to Spinnakers Beach Club that is raining money for the Tallahassee Down syndrome organization. This angers me as we have local non profits supporting our special needs families that are hurting financially and some closing their doors. I am so disgusted with this community right now. This takes monies out of our community and puts in other communities. What is wrong with Bay County!!! Our kids and families are hurting!! I have already contacted the event and will be contacting spinnakers. Rokbythesea.org
I get it! Great cause, I am not dissing that!!! However this is hurting our families here in Bay County. If you are going to bring an event like this that is helping out charities, why not keep it local??????
Can you just imagine how this is going to make local special needs family feel?? I can tell you! Angry, cheated, and totally in disblief that their community would bring an event of this size in just to support families in another county.
Please if you are reading this, please help spread this outrage!! We have got to get our community leaders, business, and families to hear that this is happening and that we as parents and support providers are angry and demand that they start supporting our families right here in Bay County!!! This is going to continue to happen unless we pull together as a COMMUNITY. I have seen over the past few years families moving out of this county due to the lack of support services. This is wrong!! Please help spread the word. Support Special needs families in Bay County Florida!!!!