Down Syndrome BlogIts been a while since I've been here. Life is just crazy hectic. Here's a small glimps of what is going on with our Sam these days... Mar 4, 2010, Teeth and a VoiceSam is 6 years old now and in Kindergarten. He recently lost a tooth and the new one has come in almost completely sideways. The dentist says this is pretty common for kids with Down syndrome. Meanwhile, his other teeth are getting shorter and shorter because of his incessant grinding. Aaargh. What to do? On another note, he still is not talking. He has started using PECS (Picture Exchange Communication System)at school and seems to be doing great with that. He also still signs some, but not many of the other kids know sign language. The other day I was picking Sam up at school and as one of his classmates was leaving he was trying to get the other boy's attention (to say bye). Since he is unable to say much, he just yelled, "Aaaaah!", and as his mother and translator I knew instinctively what he was trying to accomplish. Its heartbreaking when you know your child has so much to say, but cannot. I am more determined than ever that Sam really needs a "voice", not just a book with pictures to exchange. Now, I'm not saying the picture exchange thing is not good, but he needs a real voice! I'm thinking the Dynavox V or VMax, though they are quite costly. I wonder if insurance will pay for any of it... Jul 15, 2009, Famous People With Down SyndromeDid you know there are many famous people with Down Syndrome out there? Take a look at their inspiring stories here. Permalink -- click for full blog post "Famous People With Down Syndrome" Jul 12, 2009, Down Syndrome StatisticsDown syndrome statistics and incidence Permalink -- click for full blog post "Down Syndrome Statistics" Apr 29, 2009, About Down SyndromeA site to bring you as much information as possible about Down Syndrome from a more personal perspective. Permalink -- click for full blog post "About Down Syndrome" Mar 29, 2009, Prenatal Diagnosis of Down SyndromeThis page is for parents who have received a prenatal diagnosis of Down Syndrome for their baby Permalink -- click for full blog post "Prenatal Diagnosis of Down Syndrome" Mar 29, 2009, Down Syndrome HealthDown Syndrome Health gives a brief description of some of the health problems a person with Down Syndrome may have. Permalink -- click for full blog post "Down Syndrome Health " Feb 28, 2009, Down Syndrome Support GroupsA listing of Down sydrome support groups Permalink -- click for full blog post "Down Syndrome Support Groups" Feb 10, 2009, Einstein SyndromeEinstein Syndrome is an article that really, really hits home. Permalink -- click for full blog post "Einstein Syndrome" Nov 5, 2008, Inspirational StoriesI have been getting a few emails here and there with stories of inspiration about kids who have Down syndrome and I would like to share them with you at Inspirational Stories Permalink -- click for full blog post "Inspirational Stories" Nov 5, 2008, Down Syndrome Inspirational StoriesLooking for an inspiring down syndrome inspirational story? This is the place to find it. Permalink -- click for full blog post "Down Syndrome Inspirational Stories" Jul 3, 2008, Education and Kids with Down SyndromeGetting a good education is important for kids with Down Syndrome. Join us as we navigate through the public school systems in the U.S. Permalink -- click for full blog post "Education and Kids with Down Syndrome" Jun 30, 2008, Online Community
Did you ever wish you could "talk" to other parents or caregivers of persons with Down Syndrome? Are you a person with Down Syndrome wanting to chat with others who have Down Syndrome? Click on the logo below to visit this safe online community. May 16, 2008, Call for PhotosFor all you proud parents of kids with Down syndrome, enter the Times Square Video Contest and you might see your little one on the big screen! Details can be found here : Apr 22, 2008, Sam's AdventuresI wonder how many other parents of kids with Down Syndrome there out there who are having trouble with keeping their child in the house?!?! Sam has a very adventurous and inquisitive nature and keeping him in the house is a 24/7 job! Ours is a rather large household, including four (yes four!) teenagers, two grade schoolers, Sam, and a 3 month old baby. As you can imagine our little 2000 sq.ft. home is quite chaotic at times. People are coming and going all the time, noise levels can easily get out of control, sometimes its just a plain madhouse! We have latches high up on ALL the doors leading to the outside world! And yet...Once in a while Sam manages to escape. Just last week he was brought home by a kind elderly man (whom we are not acquainted with who lives on the street perpendicular to ours. Its happened before...other neighbors have brought him home. We have frantically searched the yards and streets near us for our little runaway. Once he even woke me up early in the morning by knocking on the door. It turns out that when my husband had left for work (this was before we had latches at the tops of the doors) Sam woke up and decided to go exploring. He has long since figured out how to get around the Safety door knob covers you can buy almost everywhere. I don't think it will be long before he figures out how get around these latches as well. Already he is pulling a chair over to the door trying to reach the latch. It's only a matter of time before he starts stacking things on top of the chair until he can reach. What to do?!?!?! Any ideas? Please send me an email. Mar 29, 2008, Diabetes in Children with Down SyndromeWhat every parent should know about diabetes in children. Permalink -- click for full blog post "Diabetes in Children with Down Syndrome" Mar 14, 2008, Sam's HippotherapyOur four year old son who has Down Syndrome has started hippotherapy! Read all about it here. Permalink -- click for full blog post "Sam's Hippotherapy" Feb 14, 2008, Down Syndrome ArticleI came across this article today...the story of two women with Down Syndrome who were used as suicide bombers in Baghdad. What a sad state our world is in. Of course, in many countries around the world babies with Down Syndrome are aborted just as easily as these two women were targeted... Should our outrage be the same for both situations? Only you can answer that for yourself. For me, having a child with Down Syndrome has brought such joy. Sam is truly a delight and though there are difficulties and worries, it's worth it. What child does not cause difficulty and worries. Our struggles with Sam are just different from those we have with the other kids and believe me its been such a growing and eye-opening experience! Jan 15, 2008, fsga4d9d
Permalink -- click for full blog post "fsga4d9d" Jan 13, 2008, Helpful LinksLists links to other helpful sites Permalink -- click for full blog post "Helpful Links" Jan 11, 2008, Hippotherapy in Down SyndromeIs your child getting bored with the same old tricks from his therapists? Hippotherapy in down Syndrome will enlighten you about he new 'therapy with a twist'! Permalink -- click for full blog post "Hippotherapy in Down Syndrome" Nov 18, 2007, Hippotherapy for SamWe are about to embark on a new adventure with Sam. Though he has made great strides in the private speech therapy sessions he has once a week, he seems to be getting a little bored. We have decided to try hippotherapy after Thanksgiving. He loves animals and the time he got ride on a pony at a school carnival he did not want to get off. Visit our hippotherapy page to get a basic idea of what it is and who it can benefit. Look for more information about Sam's first session after Thanksgiving! Permalink -- click for full blog post "Hippotherapy for Sam" Oct 15, 2007, Down Syndrome PrintablesFor babies with down syndrome printables that are visually stimualting like these are great to hang up in areas where baby spends a alot of time. Permalink -- click for full blog post "Down Syndrome Printables" Sep 8, 2007, Sammy goes back to school...Sammy's second year in PPCD is off to a running start! Last year we did it their way. Well this year it's going to be MY way. Sam's school is supposed to be one of the best in the area for special ed. Ha! That may be, but I was pretty disappointed with the progress he made last year. Last year he was in a full PPCD class. Because of his cleft palate (which has been repaired) he is having more difficulty learning to speak than the average child with DS. My biggest concern last year, as well as this year, was that he would be around speaking children. Unfortunately that was not the case. I let the "professionals" talk me into and out of everything they wanted. This year I am a new person! No more letting others tell me what is best for my child. I know what he needs, what he can handle. Well this year, once again, he was pced in a PPCD only class.At "meet the teacher night" I expressed my concerns about Sam being with speaking children and having the opportunity to be in an integrated classroom. The teacher said she would keep an eye on him to see if he was in the best placement. As it turned out, I did not wait for her to tell me. The three or four times I brought Sam to school I saw some things in that classroom that were very disturbing to me. Not dealing with the teachers mind you, but two of the three other children in the class. I won't go into detail, but suffice it to say that I knew Sam would not learn anything good in that class. I believe it was the fourth day of school that I called the principal and told her I wanted to try Sam in the integrated class. Yay! for me, I did not back down! He just finished his fourth day of the "trial period" in the integrated class and I am thrilled to report he is doing well according to his teacher! Jul 27, 2007, Getting Ready for Your Baby with Down SyndromeHelpful hints about getting ready for your baby with Down Syndrome. List of nursery needs, list of things to bring to the hospital, some things to consider... Permalink -- click for full blog post "Getting Ready for Your Baby with Down Syndrome" Jul 27, 2007, Taking Care of Yourself and Your Family When You Have a Child With Down SyndromeSome advice on taking care of yourself and your family when you have a child with Down Syndrome
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