21 things my son has taught me

 

Caroline Richardson, from Harrington Park, with her son Joshy, 8, who has Down syndrome. She would like to educate people about the condition. Picture: Robert pozo Source: News Corp Australia

by Vera Bertola from MacArthur Chronicle Campbelltown:
1: Every chromosome has two chromosomes. Trisomy 21: on every 21st chromosome it has a third chromosome.
2: No two people with Down syndrome are the same. They have their own personalities.
3. They are not always happy all the time. They can get very sad, angry and frustrated, just like you and I
4. It is very common for people with down syndrome to have a lot of medical conditions and problems. But not all. Joshy is one of the few who don’t have a heart condition, kidney problems or major bowel problems.
5. Developmentally people with Downs can be mild, mild to moderate, moderate to severe. Severe and so on. Joshy is severe. He wouldn’t be able to cope in a unit in a main stream school so he is in a special school.
6. People with Down syndrome can have dual diagnosis. As well as have Down syndrome, they can also have autism, defiance disorders, ADD, ADHD. The list can go on.

7. People with Down syndrome can work in jobs the same as anyone else. Some can drive cars.

10 Things my Child with Down Syndrome has Taught Me

by Bleigh Ahl Garcia from News of Salem County:
It has been 1 year since Tristan was born, and 360 days since I received he news that he has Down Syndrome. As I sit here in amazement at the whirlwind of a year we have had with Tristan in our lives, I just wanted to share a few things I have graciously learned so far in this journey.
1. Always try to look at people through God’s eyes…. if you look with your own eyes, you might miss something.
Having Tristan has taught me to see people for who they really are. I’ve always thought I was pretty good at this because of how I was raised, but I have to admit that I was giving myself way too much credit. After having a child with Down Syndrome, God has softened my heart so much and has given me more compassion for all types of people. I didn’t realize how much I needed it. I no longer am fearful of or uncomfortable around people with developmental disabilities or brain injuries. That fear came from a place of ignorance and misunderstanding. Tristan may have different needs and need a little more attention and care, but raising him as been just as “normal” as raising our son without Down Syndrome. He is a child who needs to eat, sleep, poop and be changed. He smiles when he’s happy, and he cries when he’s not. He has feelings. He has a spirit. His life is precious, and he has a specific purpose and calling. Most of all, he is loved by a God who doesn’t make mistakes. When God looks at him, He is overwhelmed with love. That’s how He sees all of us. My prayer is that I have the ability to look at people and see the value of their spirit first, rather than their disabilities and outward appearance.
2. Celebrate the Small Victories.
I’ve come to realize that every effort that Tristan makes to make a sound or move on his own is a HUGE accomplishment. Have you crawled recently? Like, literally gotten on the floor and army crawled on your belly? Well if you haven’t, just trust me….it hurts. For a child with a developmental delay, a heart defect, low muscle tone, vision problems, and breathing problems… crawling 2 yards is like running a marathon. That is something that most of us ‘normal’ and healty adults would complain about on a daily basis without realizing it. So, we will celebrate every single “milestone” whenever it happens, even if it is 2 years later. Though some victories may seem small to others, they are huge to Tristan….and that’s worth celebrating.
3. Slow Down & Enjoy the Ride.
I have to admit, although we have our struggles, my husband and I could win an olympic medal at getting things done on a schedule. More specifically, healthy meal planning while on the go for a family of four. We

A Dream for My Daughter With Down Syndrome

by The Stir Bloggers from The Stir:
I've debated posting this letter a million times. Mostly because I know I have readers who will not get this. Some readers won't because they love me and my family and Lily so much...they just don't ever want us to hurt. So to prevent that hurt -- or stop it -- they will say things like, "please just accept Lily for who she is. Just give her time, and trust that she is who God made her to be."
Some readers won't get this letter, because... they simply can't relate. As understanding as they might be, they will never ever know how it feels be the parent of a child with special needs. And believe me when I say, I don't blame them for not being able to relate. I'm in a club that I didn't choose to be in myself, although I wouldn't bargain my way out of it if I could.
I've learned too much, loved too much, grown in ways I didn't know I needed to, discovered little rooms...vast rooms...in my heart that I never knew existed since having Lily. I cannot imagine, and I don'twant to ever imagine, life without Lily; this letter has absolutely nothing to do with a lack of love for her or a desire for her to be someone else. She's my Lily, and I truly believe that quote at the top of my blog...the one that says there was no mistake here. I believe it with all my heart.
But there are some days when I dream....

Parents of children with Down syndrome mentor other parents

by Karen Garloch from The Charlotte Observer and Centre Daily Times:
About two hours after Melissa Thomason gave birth to her son Welles, she and her husband learned their baby had the chromosomal abnormality known as Down syndrome.
"I remember sitting in the hospital room and having a lot of uncertainty about what that diagnosis meant for us, what it meant for him." She wished she could talk to someone who'd had the same experience.
So when the Down Syndrome Association of Greater Charlotte (N.C.) recruited parents to become mentors for new parents of babies with Down syndrome, Thomason was among the first to sign up. "I felt like I needed to be that person for someone else."Through the "First Call" program, Thomason, 32, of Harrisburg, N.C., has been matched with two other families who learned of their babies' Down syndrome through prenatal genetic testing.
Both couples had chosen to continue their pregnancies before they met Thomason, but she wouldn't have been surprised if they had considered abortion. If she had known in advance, Thomason said, "I would have had serious questions about whether I wanted to continue the pregnancy or not.
"Today though, Welles is 11 months old, and Thomason feels differently."

Medical Issues in Down Syndrome: What Every Parent Needs to Know - Dr. Kishore Vellody

Down Syndrome Center at Children’s Hospital of Pittsburgh of UPMC Welcome to the 2013 Down Syndrome Podcast Series provided by Children’s Hospital of Pittsburgh of UPMC and  hosted by Kishore Vellody, MD, medical director of Children’s Down Syndrome Center. The podcasts will focus on a wide range of issues related to down syndrome for parents, caregivers, educators, and medical professionals. Podcasts are updated regularly and will feature discussions with medical experts in cardiology, otolaryngology, sleep disorders, infectious diseases, and more. Download and subscribe to this podcast series on iTunes. If you have a topic that you would like us to discuss, please send an email to downsyndromecenter@gmail.com. Note: IE9 and IE10 users, please view these podcasts through iTunes. Medical Issues in Down Syndrome: What Every Parent Needs to Know This six-part presentation was given by Kishore Vellody, MD, medical director of the Down Syndrome Center at Children’s Hospital of Pittsburgh of UPMC at the 2013 National Down Syndrome Congress Annual Convention held July 19-21, in Denver, Colo. Released: 7/26/13 Medical Issues in Ds, Part 1 (Background, Genetics, Developmental) Dr. Vellody spoke at the National Down Syndrome Congress meeting in Denver, Colorado in July 2013. This is the first of six parts, discussing background, genetics, and developmental issues in Down syndrome. Direct download: Medical_Issues_in_Ds_Part_1_Background_Genetics_Developmental.mp3

Why having a child with a disability is not like being sent to Holland



"Its Not Holland" -by my uber-awesome friend Rhy from "life with talking trees": 

Why having a child with a disability is not like being sent to Holland.

This parable bothers me. It bothers me a lot. While it is certainly uplifting, it makes me uncomfortable, because it denies a central and in my mind, undeniable fact about the experiences parents of children with life altering difficulties face: It is much harder and more difficult to parent a child with a disability than it is to parent a neurotypical child with no health challenges.

In my mind, a more accurate analogy would be this:

Imagine planning a trip to Paris for you and your partner. You get your guidebooks, your luggage, your wardrobe and your plane tickets. You research everything about Paris so you'll be ready when you arrive. You make make reservations. You talk with friends and family about their wonderful trips to Paris and how much fun they had. The two of you talk everyday about how much you want to go to Paris and how amazing it's going to be when you get there.

You get on the plane and take off. Suddenly, without explanation, the plane is diverted. Then at 5000 ft you and your partner are yanked out of your seats, strapped into parachutes you only vaguely understand, and tossed out the door.

Some how you manage to make it to the ground.

Could Using An Advocate Help You Get What Your Child Needs In School?

from ParentAdvocates.org by Reed Martin, J.D.:
LINK
(Written for Autism/Asperger's Digest. Check out this great magazine from Future Horizons)

When a parent learns that their child has been diagnosed on the Autism spectrum they are introduced into what many have aptly called "the special education maze." We all know that parenting by itself is difficult enough but are you now expected to become a special education law expert? Federal studies have shown that most parents of children with special needs spend their energy and emotions on other problems related to their child and accept whatever they are offered by their public school system.

Our experience consulting with thousands of families in all 50 states over thirty-plus years shows that parents will eventually realize that important gains for their child are being delayed or even permanently lost by simply accepting what their public school chooses to offer and by not advocating for more.

What might be lost for the child? The Congress established four educational goals for our children in 1990 in the Americans with Disabilities Act, which were repeated in the IDEA and the Rehabilitation Act (Section 504): (1) to get as close as possible to being able to live independently by the time they exit high school, (2) to learn work skills that make them as employable as possible, (3) to learn how to acquire further education and training beyond high school if possible, and (4) to learn how to gain access to recreation and leisure in the community in which they live.

Congress and the U.S. Supreme Court have recognized that the system works only if there is effective advocacy for the individual child. In several sections of the IDEA, discussed below, Congress recognized that parents need the assistance of advocates. The Supreme Court ruled in their first special education decision that "Congress sought to protect individual children by providing for parental involvement.. " and by emphasizing "the process of parent and child involvement... to assure that appropriate services are provided." Board of Education v. Rowley, 458 U.S. 176, at 208-09 (1982).

We regularly consult with parents in telephone conferences, over the internet, and through internet-based video conferences. We interact with very hard working parents, who care a great deal about their child, and have invested a lot of energy -- but who have hit a "dead end" and often do not know "the next step" to take to make their advocacy effective. Parents often report to us that they have been discouraged by being told "You are the only parent who is not satisfied with our program" or "The law will not allow us to do what you are asking."

For that very reason, whatever step in the process the parent is in, we urge that they consult someone who has been through it before. Join a disability group. Consult an advocate. Learn from others. Share strategies. Keep from burning out. Celebrate each others' victories. You will undoubtedly find someone who has wrestled with a school district on the same issue you are now pursuing. You can learn invaluable information from them and they might join you as an advocate for your child. You will learn that you are not the only parent who is not satisfied and that the law might require the school to do precisely what the school is refusing to do.

Who can be a parent Advocate? There are no real standards at this time. The IDEA statute refers to "individuals who have knowledge or special expertise regarding the child." You need someone you can trust. Someone who truly cares, but who can give you an objective view of your situation. Parents will tell us they want to go to court immediately because a teacher said their child was "a waste of their time and that they did not go to college to teach children like that." An objective advocate will probably suggest that the parent spend their time instead on nailing down a really good evaluation of the child so that they can get an IEP that will direct that teacher in writing to do exactly what they need to do for your child.

A first step is, with the advocate's help, to get the written statements of the parent's and child's rights under the procedures that govern the IDEA, Section 504 and the ADA. Once you get those statements, an advocate who has been through this before can help interpret them. If your school district and State education agency fail to get you the required statements, an advocate can help you write a letter of complaint which lets the school know that you will not accept violations of the law.