I am a kindergarten teacher in the public schools and I have worked the last 2 summers as a summer camp teacher at the Down Syndrome of Louisville and have learned ALOT about what I want for Ellie and what we definitely DO NOT want for Ellie. I have spoken with lots of parents in lots of different stages in their acceptance, denial, and journey with a child with down syndrome. I will say these are the top things that will improve a child with down syndrome's quality of life!
- Early Intervention (begin as early as possible) - we started at 6 weeks old with PT and DI.
- Brain supplements - we started using Brainstrong a plant based DHA supplement - and we now use COROMEGA 3+D a fish oil DHA and Omega 3 supplement. Children with DS tend to stop producing the oils in the brain that help connections be made when they are really young. Replacing these oils improves thinking and brain function. If you recall - "back in the day" parents used to give their children a spoonful of cod liver oil everyday...and look at how quickly our society advanced...we got away from this and just take a ride on our highways at some of the drivers...enough said...lol
- Strong Parent Avocation - many people (professionals included) do not truly understand DS and they use the title DS to make decisions for our kiddos. DO NOT let this happen. KNOW your rights as a parent - know your child's rights as a student. DS does not define our kiddos, it is just a characteristic like eye color and hair color. Do not be afraid to tell educators, doctors, and anyone else "NO!"
- Set High Standards - Your child will work to meet every standard you set for them. If you believe your child can do it...then they most likely will, if you believe they can not...then most likely won't. Set little goals to reach larger goals. Celebrate small achievements and do not compare your child with the success or failures of other children.
- DO NOT MAKE EXCUSES - Many of the children I have worked with who struggle (with DS and without DS) main reason for struggling is because parents made excuses for them. Ohh well I know they are running around like they have no sense, but they have DS so its ok. Ohh I know they are pinching and hitting, but they are just wanting attention so its ok. My most favorite "Well they won't eat anything but chicken nuggets." The more excuses you make for a child the more reasons to make excuses will arise. Just decide...I do not care if you have DS it is dinner time you have to sit at the table with the rest of us. I do not care if you have DS it is not ok to hit someone for ANY reason. I do not care if you have DS, this is what we are eating for dinner, this is not a restaurant - eat. When your child is hungry trust me they will eat! Do not treat your child any different than you would if they didn't have DS. You and your child will benefit from this!!
I could spend all day writing about the events that have occured in our lives since the past almost 2 years, so, I am just going to focus on where we are...
Our little Ellie Mae is a typical rambuncious, stubborn, tornatic, adorable, and sweet 3 year old girl with an abnormal gene. She has recently been "kicked out" of the first steps program so she could enter the public preschool systems, but she is not ready for that kind of setting. So we are working with her at home and she will begin preschool in the fall. As of now, compared to her typical peers she is right on target in most areas except speech. She has a great understanding of what is being told to her and can follow directions (when she wants to), but she just doesn't "want" to talk. She has found ways to express her needs by using her made up sign language, bringing you to what she wants, or grunting and pointing and then attempting to say what you want her to say to get what she wants.
We had a scare last month when she went for her CT scan of her neck (a regularly checked item in children with DS). Her scan came back inconclusive. She had to have a sedated MRI done and the possibility of another surgery lingered. Although I know I could have handled another MAJOR surgery, I did not WANT to handle it. Through prayer and pushing forward her sedated MRI came back normal and NO SURGERY!! Medically she has no medical information to report. She only has to see the cardiologist 1 time a year and the pediatrician 1 time a year just as a check up. Praise the Lord!!!
She continues to amaze me and delight me in almost everything she does. She LOVES her new sister Rylee and between the two of them they keep me on my toes. Raising a child with Down Syndrome has proven to be no different than raising a child without Down Syndrome. Once I made that realization, my life with her was a lot more enjoyable!
I can not wait to see the independent woman she will become. She is soo driven and curious and amazes us daily! Thank you Lord for blessing us with an extra chromosome!!
