DownSyndrome.com

New Photo Albums … Yea!

Justin — Sun, 21 Jun 2009 00:15:00 +0000

Hello all,

I just added the ability for everyone to upload their own photos to their own member pages. Just go to the top navigation bar (above) and move your mouse over “My Account”. You will then see an option called “Album” ..

Once you click on Album, choose “Upload Picture”. Fill in a name and a description and choose “browse” and then click submit. Thats it!

After you are done tell everyone that you have new pictures by either writing on your “Wire” or by adding an entry to the new “Buddy Pictures” Group.

I cant wait to see all the great photos. I just uploaded one of Teddy. Please enjoy. (See Teddy Here).

New Photos

Justin — Fri, 06 Mar 2009 06:07:31 +0000

There are some wonderful new photos that have just been posted on the site. Thank you Jakey, Braiden, and Rosa for adding some light in our lives by sharing your wonderful pictures. To see more of these beautiful kiddos, click HERE

If you are interested in sharing either pictures or video, please see the instructions on the photos page and I will get them posted.

My Son Teddy

Justin — Tue, 24 Feb 2009 04:02:58 +0000

Hello everyone..I wanted to post a video of my son Teddy. It has a song that I love that makes me tear up every time. I wanted to kick this multimedia experience off by posting something of my own. I absolutely encourage you all to post your own pictures and videos. As the site grows it will become easier. Please enjoy ..

Featured Blogs - Rebecca Frederick-Jilg

Justin — Wed, 18 Feb 2009 23:10:40 +0000

Technicality

This is a little technicality, but since I was made aware of it, I like to make others aware of it also. I used to say it this way, until a friend of mine made me more aware. Our children have Down syndrome. They are not Downs kids or Downs babies. This is something they have, not are. They are children first.

You would not call a child with cancer, a cancer baby or a cancer kid. The same applies for our children. They are not a Downs baby or a Downs kid. They have Down syndrome. They are not Down syndrome. The child comes first. Teddy is my son. A beautiful 4 year old who has Down syndrome.

The more we can use correct language, the more we can change the attitude that people have toward our children. We want others to see our children for who they are first. We should talk about them in this way.

Top Ten IEP Tips

Justin — Tue, 03 Feb 2009 02:27:35 +0000

The special education advisory council posted the following advice on how to “deal” with your child’s IEP. Their advice is invaluable. More information can be found on their website here.

Preparation is a must! If it’s a MET meeting, you need the evaluation to review. Request to meet with the psych beforehand if need be. Don’t try to do the IEP in the same meeting as the MET; it’s too much. Ask to see the goals and a draft beforehand so you aren’t rushed to read through it on the spot.
Make a wish list. Don’t go in with too many little things, it will distract everyone and tie up too much time on small points. Go in with your big list of 5. Don’t get sidetracked. Stick to the points.
Look ahead. If there is a possible conflicting view on services or placement and you think there will be opposition, do your research. Find studies or research to back your views as well as data on your own child that proves your point. This can include home video, work samples from home or anything you think may convey your viewpoint.
Bring treats. Yes, bring treats. Whether you agree with everyone or think they are doing a good job, most likely people are trying very hard and want what’s best for your child. By bringing something, you set the tone for a friendly meeting and show some gratitude for their work (or the work they will be doing!)
Include your child. Depending on age or severity of disability, the child should somehow be included. If they are young or content is inappropriate they can come in the beginning and say hi. Have them bake cookies for the meeting or take video to show that includes an interview. Put a picture in the middle of the table everyone can all remember that it’s the child and what they need- not individual positions.
Regroup when needed. Bring something to sip on when you’re getting upset and need to pause. Leave the room to regain composure if you are getting really upset to gain some clarity. It’s better than saying something harmful. The team will wait.
Take your time. You are only signing that you are in attendance. This is a working document. Hopefully, your relationship and participation will continue throughout the year. This document can be amended or tweaked at any time.
Make sure the “present level” is accurate. The present level in the IEP is the picture of where your child currently is. This drives the goals, which drives the services and placement. If you feel the picture that is being painted isn’t correct, explain why. Remember you don’t see your child at school and they don’t see them at your home. This is a time for both parties to get the whole picture of the child. You can include your own statement of the present level in the IEP. Definitely do this if there is a disagreement.
Learn the process. The more you know about the process, the more relaxed you will be. You will know what you can and can not do. You will know your rights and won’t feel so intimidated. You will be respected as an equal member of the team, not just an emotional parent.
Breathe and BE NICE. Honey catches more flies. Have confidence that you are the expert in your child and the team needs your help. And you need theirs. Your job is to help the team pull together all the parts. The experts all focus on their own specific area. You know the whole child, the big picture and where you think they can go. You don’t need to learn every little detail of every area of expertise in order to be effective. You just need to make sure everyone is one the same page so everyone can be successful.

Send thank you cards after and don’t disappear until next year. This is an ongoing process that needs work along the way. If you cultivate the team the whole year, the meeting will just be a formality and won’t be so scary.

Featured Blogs - Tri 21

Justin — Mon, 26 Jan 2009 00:21:58 +0000

Anybody out there?

January 22nd, 2009

Hey is anybody out there reading this stuff? Please let me know! Anyway, I took my daughter to the endocrinologist for a routine check up today and everything looks pretty good. Is it just me or does it feel like a full time job to just take care of all these appointments? We see the endocrinologist every 3 months, the ENT every 3 months, the eye doctor every 6 months, the cardiologist, the orthotist, we have CPSE meetings, etc etc. My poor daughter sees more specialists than an 90 year old woman!

Create A Blog

Justin — Sat, 24 Jan 2009 23:31:53 +0000

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Blogs of Note

What is Down Syndrome?

Justin — Mon, 19 Jan 2009 18:09:54 +0000

What is Down Syndrome?

Down syndrome is a genetic disorder that delays in physical and intellectual development. The condition varies in severity, so developmental problems may range from mild to serious.

Down syndrome is the most common genetic cause of severe learning disabilities in children, occurring in one in every 800 infants. Every year, as many as 6,000 babies are born with Down syndrome in the United States. The condition is named after John Langdon Down, the doctor who first identified the syndrome.

There’s no medical cure for this condition. But increased understanding of Down syndrome and early interventions make a big difference in the lives of both children and adults with Down syndrome.

Diagnosis

Down syndrome is usually identified at birth or shortly thereafter. Initially the diagnosis is based on physical characteristics that are commonly seen in babies with Down syndrome. These include low muscle tone, a single crease across the palm of the hand, a slightly flattened facial profile and an upward slant to the eyes. The diagnosis must be confirmed by a chromosome study (karyotype). A karyotype provides a visual display of the chromosomes grouped by their size, number and shape. Chromosomes may be studied by examining blood or tissue cells.

Causes

Down syndrome is usually caused by an error in cell division called nondisjunction. It is not known why this occurs. However, it is known that the error occurs at conception and is not related to anything the mother did during pregnancy. It has been known for some time that the incidence of Down syndrome increases with advancing maternal age. However, 80% of children with Down syndrome are born to women under 35 years of age.

Learning & Development

It is important to remember that while children and adults with Down syndrome experience developmental delays, they also have many talents and gifts and should be given the opportunity and encouragement to develop them.

Most children with Down syndrome have mild to moderate impairments but it is important to note that they are more like other children than they are different. Early Intervention services should be provided shortly after birth. These services should include physical, speech and developmental therapies. Most children attend their neighborhood schools, some in regular classes and others in special education classes. Some children have more significant needs and require a more specialized program.

Some high school graduates with Down syndrome participate in post-secondary education. Many adults with Down syndrome are capable of working in the community, but some require a more structured environment.

Health Issues

Many children with Down syndrome have health complications beyond the usual childhood illnesses. Approximately 40% of the children have congenital heart defects. It is very important that an echocardiogram be performed on all newborns with Down syndrome in order to identify any serious cardiac problems that might be present. Some of the heart conditions require surgery while others only require careful monitoring. Children with Down syndrome have a higher incidence of infection, respiratory, vision and hearing problems as well as thyroid and other medical conditions. However, with appropriate medical care most children and adults with Down syndrome can lead healthy lives. The average life expectancy of individuals with Down syndrome is 55 years, with many living into their sixties and seventies.

Pre-natal Diagnosis

Two types of procedures are available to pregnant women: screening tests and diagnostic tests. The screening tests estimate the risk of the baby having Down syndrome. Diagnostic tests tell whether or not the baby actually has Down syndrome.

Screening Tests

* At this time the most commonly used screening test is “The Triple Screen.” This is a combination of three tests that measure quantities of various substances in the blood. These tests are usually done between 15 and 20 weeks of gestation.
* Sonograms (ultrasounds) are usually performed in conjunction with other screenings. These can show some physical traits that are helpful in calculating the risk of Down syndrome.
* Screening tests do not accurately confirm the diagnosis of Down syndrome. In fact, false positives and false negatives frequently occur.

Diagnostic Tests

Three diagnostic tests are currently available:

* Amniocentesis is performed between 12 and 20 weeks gestation.
* Chorionic Villus Sampling (CVS) is conducted between 8 and 12 weeks.
* Percutaneous Umbilical Blood Sampling (PUBS) is performed after 20 weeks.

Thank you!

Justin — Mon, 19 Jan 2009 18:05:05 +0000

The site is on it’s way. Please share your thoughts about how to better the site.

Welcome to DownSyndrome.com

Justin — Fri, 19 Dec 2008 04:04:04 +0000

Why Create a Social Network?

* The Down Syndrome Social Network

* Overview

* Why Create a Social Network?

We’re looking for contributors! If you have something to say on the site and you want to share your experiences an or thoughts, you can either create a blog or submit an article to the main website which will be readable by the tens of thousands of readers on the site every month.

We’re seeking our friends and family who are passionate, loving and caring about making developing a community for and about individuals with Down Syndrome and their loved ones.

Come join us. The goal with this site is to be the preeminent social community, up-to-date research and resource to help fund local groups with their much needed activities.

Please tell your friends to join the network and create a blog!

The result of bringing your friends and family will be the ability to help fund your communty activities as well as promote awareness among our community as well as society at lorge.

From the DownSyndrome Blog

The Down Syndrome blog will have two objectives:

1) communicate to the thousands of people visiting the site every day

2) to communicate my personal experiences with the world in an attempt to humanize the experience of love my son with Down Syndrome. I couldn’t be more excited. Pictures to come.

More on the DownSyndrome Blog…

There are hundreds of ways to use DownSyndrome.com You could create a social network to:

Interact with your friends, families, support groups, etc.

Promote upcoming events, share recent stories, collect donations, put advertising on your site to try to monetize your traffic and make money for your support organization; and most importantly, hear what your friends and constituents are saying. This is the most fun!

Raise awareness for Down Syndrome-related issues - - Signup Here

Get the word out on important issues and causes and inspire others to take action

Exchange parenting tips

Let everyone benefit from your experience and swap stories with your friends all over the World.

Connect with people in similar situations from every corner of the World.

Start the meet-and-greet before you even arrive, and share photos and videos when you get home - Sign-up Here

Make your “wedsite and/or blog” - Share your experiences with the World. Help your friends and family with Down Syndrome get online also.

Make connections and receive direction from seasoned pros.

Elicit donations for your groups. Link to DownSyndrome.com and we will help you with all your fundraising activities.

Meet your neighbors

Inspire & educate

Learn new techniques and mentor new and expecting parents.

Share insights & find support

Join together with friends who are facing the same issues