This is a blog post consisting of personal experiences, mistakes and opinions in raising my child with down syndrome. At the time of this writing, Jace is already 7 years old. Most of my notes are recollections of previous experiences.
My eldest child Jace was born with an extra chromosome 21. Raising a first child with a down syndrome is challenging both financially and psychologically. Our ob/gyn wasn't able to flag it during the check-up due to subtle indicators. Upon delivery we were basically clueless. Jace required a stomach bypass surgery due to blockage. Jace was mis-diagnosed with Hirschsprung Disease, causing him to be under ostomy care. Jace had a hole in the heart requiring, heart surgery.
1. Inform Yourself
You need to get the information. Read online. Join Facebook Groups in your community. If you stay in Singapore Join DSA, or if you live in Philippines Join DSAPI.
2. Give Your Child a Chance to Survive
Give your child the medical care he needs. Do not doubt or be scared of raising him.
3. Prepare and Plan
Raising kids is not simple. Raising a special kid is way more complicated. In most things is life, planning is one of the key for a stable and predicatable outcome. It can also align personal expectations and targets
4. Create a Routine
As much as possible create a repeatative routine for you kids to follow. It will improve the habits and will increase the learning process.
5. There is a Better Future
I'll be honest, most of my relatives or friends will say that having a special child will bring great luck, as if Jace is a walking good luck charm. I would hear this saying so often that I can already anticipate it from them. In tagalog you here them say "Magdadala ng swerte ang batang yan" or other version with the same message. My take on this one is all kids are special