Hi C.,
5 1/2 years ago, our first child was born. Shortly after his birth, the doctors told us that he has Down syndrome. We were like your friends in that we knew nothing about it except that you didn't want to have it.
It is a very overwhelming situation to be in, but the great news it there is a TON of support out there and so much information.
What is most important for your friends to remember right now is that their baby is like any other baby. He'll cry, keep you up all night, want to be rocked, will pee and poop and throw up on you, and make you so happy with his smiles that you just melt - just like any other baby! The best thing for them to do is simply love that kid.
Your friends are going to go through a grieving process as they mourn what they think they lost, and then you figure out that the only difference is that they are going to go down a different path than they thought they were and they will learn that this child will teach them things that they never knew they needed to know. He will open up a whole new world to them and enrich their lives in unimaginable ways.
Are there questions about what kind of life he'll live? Absolutely! But, really, you ask this question about all of your kids. What will she be when she grows up? What college will he go to? What sports will he play? And the list goes on and on. But, listen, there are no gaurantees in life and no matter how much your want your kid to be the quarterback on the football team, he may end up singing opera. You just don't know.
Kids with DS do have a wide range of abilities, but overall, they are really just like other kids except that they learn to do things more slowly. More than likely, their son will walk, run, play ball, talk, read, write, have a job, and maybe even get married some day. The outlook for these kids is increasingly more positive than when we grew up.
Medically, I would make the following suggestions:
1) Get in touch with a specialist that can be used as a support system to their regular pediatrician. We go to the Down syndrome clinic at the Children's Hospital in Minneapolis, but there should be other Children's hospitals that they can go to. If the distance is too far, I would think that they could at least get a phone consultation type scenario. There are also lists out there of what medical tests should be done at what age, etc. Kids with DS do have a variety of medical issues that they are more prone to: 50% have a heart defect, many have gastrointestinal blockage, they have a higher incidence of childhood leukemia, celiac disease, neck instability. There are several specialists that they are going to want be in touch with along the way, but a good beginning is their pediatrician and a developmental specialist (like at the DS clinic.
2) Have them contact the Down Syndrome Association of Wisconsin at www.dsaw.org - they will have lots of information, possibly a new parent packet, and contacts for them for parent groups in their area of the state. Chance are, there is already a support group near them and if not, there are many websites with discussion groups, etc.
4)Put an ENT on the list of doctors to start with. Most kids with DS have issues with ear infections and fluid on the ears because of the smaller faciocranial structures. The vast majority have PE tubes in their ears at a very young age - my son's first set was at 5 months old because he had fluid, which effects their hearing and ultimately speech development.
5) Get in touch with their school district immediately. The school district will send a team to their home and will start therapy in their home with their child as early as a month or 2 old. The school district can be a very valuable resource to them and I highly recommend developing this relationship.
This can be so overwhelming and seem like so much to learn, so tell them to slow down and take it one step at a time. Once they know that there are no medical issues that are urgent, they can relax, enjoy their baby, and learn as they go (just like we all do with our kids).
Please feel free to pass on my name and email. They are more than welcome to contact me. I own The Special Needs Store so I look at hundreds of products, talk to many, many parents of all disabilities, research numerous organization, websites, etc. I am more than happy to pass on some of what I've learned over the last 5 years.
Just an FYI: my little guy, Joe, is now 5 1/2 years old. He runs around like crazy with his younger sister, gives me great big bear hugs and kisses, throws temper tantrums, loves his movies, started Kindergarten this year, knows his alphabet, played on a soccer team last summer, and is one of the loves of my life! Life does go on and you learn to appreciate what you have - a very special person.
"When one door closes another opens. But often we look so long, so regretfully upon the closed door, that we fail to see the one that has opened for us." Helen Keller
"If you do not hope, you will not find what is beyond your hopes." St. Clement of Alexandra
My name is K. and my email address is ____@____.com
Tell your cousin CONGRATULATIONS! on the birth of their son!
K.