From the article: First Five Things to Do After Your Child Is Diagnosed with Down Syndrome
If you're the parent of a child with Down syndrome, chances are you've gotten quite an education since you first heard that diagnosis. What would you say today to parents who are just getting the news? Tell them about that book that explained everything, that website full of resources, that e-mail group you still lean on, that experience with your child that made you see things differently. Those of us who have been there have important gifts to give those who have not yet done that. Offer your words of wisdom and experience here. Tell Your Tips
Down Syndrome - Advice for Parents
- Follow your own instincts. No one knows your child better than you, not even the "experts." It is a roller coaster ride, but the happiness they bring doesn't come close to the ride! Enjoy.
- —Guest Patricia Ryan
The best information comes from parents
- After the grieving process, which comes and goes at various times in your child's life, find or organize a mom and tots group. The best information comes from parents. If possible, ask your local Down syndrome association if you can meet parents with older children/adults. They hold a vast personal knowledge of life with a special needs child. Remember your child with special needs is a child and will have inappropriate behaviour, just like every other kid. They need friends, a social life, playmates. Expect them to learn and grow and mature. It may take a little longer, but they will get it. The more independant they are the more confident adults they will become. Your other children will be better for having a brother or sister with Down syndrome. They will be more tolerant of others with differences, more compassionate people. My daughter is now 23 years old, a very independant woman. If I'd had a crystal ball when she was born, I wouldn't have been so anxious in the beginning.
- —Guest Bonnie Heath
One's up when the other is down
- In the early days of receiving the diagnosis, it's really common for one parent to be "up" when the other is "down," and then have the roles reverse! So many times I've seen one parent say something like, "How come HE isn't crying, when I'm a wreck?" It's really important to realize you both have stages of grieving to go through, and you won't necessarily go through them at the same time. You're individuals who will handle the news differently. Eventually you'll find you've each come full circle and are, for the most part, in the same place. For some couples this can take weeks, and others years. Do know that EVERYTHING you feel is NORMAL, and connecting with other parents who've gone through it can be very helpful. You're find you ARE ok, and you CAN make it through! Go to blogs of parents who have older kids and see what's ahead! Life is not all gloom and doom. www.gardenofeagan.blogspot.com
- —Guest Leah
Take time to grieve
- It sounds strange, but allowing yourself time to grieve is important. Getting a diagnosis of Down syndrome is a scary thing and usually comes with many more questions than answers. Your child may not turn out how you expected and it's okay to grieve for that. But also know that he or she is your baby first and will be just as wonderful and amazing as you hoped. My son with Down syndrome is 6 months old now and it is still overwhelming at times, but I can't imagine my life without him and I wouldn't want him any other way. When he was first diagnosed and I was too overwhelmed to even read any research, what helped me the most was the poem "Welcome to Holland." It is a beautiful description of how many parents of special needs children feel and it helped me get through the most difficult time of my life. http://www.ndsccenter.org/resources/package1.php
- —Guest Kristi
