Wednesday, October 26, 2011

Sharing Inspiration to Support the Yamini Foundation

Joining with Grammarly to Touch Lives Around the Globe

In honor of Down Syndrome Awareness Month, Grammarly, the premier grammar checker on the web, has partnered with to support the Yamini Foundation in India. I am joining their efforts by sharing my inspiration....
When we found out that our sweet two-week-old baby, Jett Lukas, definitely had T21, I was devastated. Between struggles with breastfeeding/weight gain and then the "doomsday" diagnosis, I cried through his first three weeks. From everything that I was reading, it was advised to let go of all the dreams that I didn't even realize that I had for my son.  But I just couldn't! I couldn't imagine giving up on his future before it even started.

When he was three months old, I meet an inspiring, helpful mom, Camille Gardiner (of Down Syndrome Foundation of Florida) and through her, discovered ways to help him: neurodevelopment, Targeted Nutrition Intervention and biomedical intervention through the Changing Minds Foundation, as well as an introduction to a great group of experienced parents/sister on the Einstein-Syndrome list.

I am thrilled with the results from all their advice and research. At 5 months, Jett first rolled over and was on target as far as milestones. He drank from a straw at almost 6 months, the day before his heart surgery. Because of surgery, his physical progress took a major set back. So, with a lot of neurodevelopmental therapy, he was army crawling by 10 months, creeping and pulling himself to stand at 13 months and beginning to cruise at 14 months.

Cognitively, he's been going strong. He randomly said clear words and phrases off and on starting with "Daddy" at 6 months. (And said "okay", "alright", "go' boy", "oh boy", and "hey" all the time.) At 8 months, he spoke his first word of intention: "water." At 10 months, he used, "ilk" (for milk) regularly.

At the second evaluation after heart surgery with Jett's neurodevelopmentalist, Kay Ness of SENC, said he had gained 12 months of improvement in the 3 months since his last evaluation. 

He consistently uses his potty for "number two" since at least 10 months old and has been letting us know when he needs to go since he was at least 6 months old. 

At 11 months, he had his first speech evaluation with Renee Roy-Hill M.S., CCC-SLP of Talk Tools. She was amazed! She said that she had to evaluate him using the typical scale, not the one for children with DS. She said he was on par and above the typical child. He has no tongue protrusion, great lip closure, strong jaw muscles, etc. She said it was the easiest evaluation she'd ever done and had the least amount of suggestions. Two evaluations later, (another with Renee Hill and one with a local speech therapist) his speech is still on target. Just yesterday, he said: up, dirt, stuck (stup), daddy (he rarely says Mommy), kiss, shoulder (dol-der), I love you (Iwuv oo)... I'm sure there was more, but that's all I can remember.

Here you can see Jett Pretending to Read at 16 Months. At 17 months, he started sight reading! The words he first could recognize were: craaaaack, gulp, hug, and whoosh. (I guess it does reveal a little about his fun personality since all but one word is an onomatopoeia. He didn't always say the word, but loved to hear you read it out loud. Oh, and when he pointed to "hug," he expected you to hug him!) Here's a video of him sight reading at 18 months:

At 19 months old, he is learning to read lots of new words every day. He's basically obsessed with words and reading. He points to a word wherever he sees it and says, "What's this? or "What's that say?" (Wassatsay) His favorite book (today) is The Baby Goes Beep by Rebecca O'Connell, pictures by Ken Wilson-Max.

Here is a video of him at 19 months old reading 9 words in a minute and 40 seconds:  

Note: He looks at me when my husband writes, "hair" because I have very long hair.

Now he's interested in writing, so I have to hurry and learn how to teach him! (I guess I'll be cutting out sandpaper letters during his nap times.)

Jett is alert and curious. He can bounce to music, play ball with you, open drawers and take out the contents, can follow simple, one-step directions (touch all his major body parts, wiggle fingers, clap hands, sit up, get ball, come here, let go, give kiss, etc.).

I can see him playing with more creativity and independence every day. It's a joy to witness his daily progress. I am grateful for Kay Ness, Teresa Cody and the amazing parents and family members who have helped along the way

I so appreciate what Camille did for me and my family that I have been inspired to follow her example by sharing what works for us with you. That's why, seven months ago, I started this blog. 

Our kids are full of potential! I wish you equal success with your loved one. 

Grammarly will donate $25 to the Yamini Foundation on my behalf. You too can make a difference. Visit to learn how you can help. 

Related Posts

Parent's Resources for Guidance on Down Syndrome
15 Things A New Parent Should Know
Changing Minds Foundation Protocol
Jett's Complete Supplement List
Get Your Own Neurodevelopmentalist
First Foods: How & What & When to Introduce
Low Muscle Tone: What to Do
Tummy Time
How to Bottle Feed & Nontoxic Bottles
Toxin Free Babies
Teaching Your Baby to Crawl
Crawling: More Important than Sitting or Standing!
Toys that Support Crawling
Toys that Encourage Fine Motor Skills
It's Potty Time!
Teaching Your Baby to Read
Review of BrillKids Little Reader
Handwriting Resources
Getting Your Baby to Communicate
Books to Read to Your Baby
Early Steps for Better Speech
Protecting Your Child's Hearing
Sleep Study: The Results
Jett's Sleep Study: Mommy's Nightmare
The Heart & Down Syndrome
Preparing for Heart Surgery/Hospital Stay
Requests for Stories of Triumph


Frank said...

Thank you so much for your support and for sharing the video of your precious boy

Laura said...

He is so smart & adorable! He has the cutesy voice when he says "wave".


Anonymous said...

Great Video! Thank you for sharing.