Down Syndrome: A Day to Day Guide: success story

Showing posts with label success story. Show all posts

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 WideAwake.org 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: http://durkinworks.blogspot.com/2011/09/jett-and-magnadoodle.html

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 WideAwake.org 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
Immunizations
Breastfeeding
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

Thursday, October 13, 2011

Lydia Does Math

Jane made this (very cute) video of her daughter, Lydia to show her math teacher that she got the concept and she could move on to something new. Thought you might find it funny and inspiring.

In case you have trouble viewing it, here is the direct link:
http://www.youtube.com/user/jdwinans?blend=12&ob=5#p/u/0/UuWrqXvVlG8

Related Posts

Meet Lydia
Lydia's Success Story

Ginkgo: The Hows and Whys for Down Syndrome
Probiotic/Yogurt Strains: Benefits and Uses
Vitamin C Plays Important Role in Brain Function
Thyroid & DS Go Hand in Hand
Healthy Meal Planning Blogs
How Much Vitamin D3?
Folic Acid Cuts Alzheimer’s Risk in Half
Parent's Resources for Guidance on Down Syndrome
Why B12 & Folinic Acid for Down Syndrome?
Get Your Own Neurodevelopmentalist
Nutritional Page
Neurodevelopment Page
Methylation Pathways
Hyperbaric Oxygen Therapy
Feed Memory by Kan Herbs

Tuesday, October 4, 2011

Lydia's Success Story

I'm so happy to share Jane and Lydia's story with you!

She mentions many different concepts, which I will follow up with in a new post every day to explain. The ones I've already blogged about, I've hyperlinked for your convenience as well as added to "Related Posts" at the end. Please keep track of your questions and, if I don't answer them in the upcoming posts, please feel free to email me (check About Me) to clarify. If you have research/ experience/comments on the topics that I haven't blogged about yet, please share with me so I can integrate them into the articles.

And to make Lydia's journey all the more inspiring, it is important to note that she wasn't a "superstar baby". She said "up" at 15 months. She didn't walk until 20 months and was, according to Jane, incredibly delayed in occupational therapy, which she thinks was rooted in vision issues. And now, Jane:

Hello,

Thanks to Andi who does a wonderful job with her blog! How lucky we all are to have a clearinghouse of information on Down syndrome.

I have not gone through my files to verify that all of this is accurate. I am NOT a doctor. What works for Lydia may or may not work for your child.

Upon request, I sent this video to Andi a while ago. She wanted me to write a success story to go with it and that has made me pause. Why is Lydia doing so well? What pieces of what we did was helpful? What would I do the same and what would I do differently if I have another child with Down syndrome? Wow. Big questions. If you are like me, you're hoping for a nice black and white, clear-cut to do list. That I don't have.... I would hand it over if I did! Here is my best shot, written with love and hope.

There are a few things that I believe had a significant impact on Lydia's physical, mental and emotional health and I would definitely do again. First, I would pray and pray and pray again. God's hand has been a vital part of our journey. Some day I'll chronicle the "invisible hand" that continually steered us in the direction of healing for Lydia. Listen. Listen to your gut. You know more than you think you do, and intuition is also God's way of helping us.

Gather your troops. It takes a village. Get into as many carpools as you can. Accept help from friends, neighbors and relatives. Seek help where you can. Make a to-do list and divvy it out... find an organic farmer to purchase beef at a good price, find an organic buying club, try 3 different gluten free breads and decide which one is the best taste for the least cash, search websites for GFCF (gluten free/casein free) Halloween treats, etc. Truly. Your loved ones want to help. Give them doable, 1-hour tasks if you can.

Here is what we did for Lydia. Serendipitously, I met a high-powered attorney from NY with a child with DS. Our phone conversation had me as the jury and she as the lead council. Beyond a shadow of a doubt she convinced me that Down syndrome is biomedical. Our kids have an extra chromosome. This impairs their functioning. Figure out what is wrong and fix it like you would any other illness. So, from the time Lydia was 4 months old, I have been convinced that DS is biomedical and it can be treated. Thank God for Cheryl G. She gave me research and hope... and guaranteed me this would work. I have the email to prove it.... and I still have the boatload of research she sent.

I did what biomedical things I knew. I pierced omega 3 caps and squirted them into her mouth. I breastfed for 15 months. I tried to eat healthy. Lydia has had cranial sacral therapy since she was an infant. Cranial abnormalities impact our kid's ability to breath, sleep, and think. We continue this therapy a few times a year, and I believe it's an important piece of Lydia's healing. Lydia's thyroid is monitored every 3 months. The thyroid is key. I'd keep a really close watch on that. My advice is to get standing orders for every 3 months at the hospital. Get them taken and don't settle for low average. (I go to the hospital because the lab techs don't always get it in one poke.) I read that our kids appear to have a great need for antioxidants and found a product recommended by many on a listserve, Ambrotose AO.   After 3 days of supplementing with A AO, Lydia's eye contact and energy increased visibly.

This has been a long haul. We've done many things. Fewer than five items have made this quick of a positive impact. We started the traditional birth to 3, early intervention, soon after the hospital. A little before Lydia was 2, we started a neurodevelopment program that included a very targeted, individualized therapy program.   I think this was helpful. It was very demanding and kept Lydia and myself isolated. It wasn't great for my mental health. If I were to do it over, I would focus most of my energy on biomedical intervention, some targeted therapy and balance for my family and myself.

Lydia became a patient of a DAN (Defeat Autism Now) doctor when she was 15 months. She started Lydia on supplements to help her altered biochemistry. Additional Oils, B12, Folinic Acid and probably zinc, Vitamin C, Vitamin D3 and a Probiotic. She ordered heavy metal testing and a Metabolic Analysis profile. The results were bleak. Heavy metal toxicity was extremely high and barely any of Lydia's metabolic profile was in normal range. The oxidation cycle, detox cycle, citric acid cycle, methylation cycle and on and on were all broken. I wept. "If you don't look, you won't find," was Cheryl's response when I said I doubted Lydia could have metal issues at such a young age.    Although it broke my heart to understand how unhealthy my baby was, we were incredibly lucky to have a doctor who knew what tests to run and then how to help bring about healing. We began chelation for the heavy metals, which present as a cog in the wheel or cycle. As we took the metals out and supplemented what was lacking in each metabolic cycle along with additional minerals to compensate for those eliminated due to chelation, Lydia began to improve. Some days I thought I could notice a difference immediately. If you are a parent of a sick child, you know that wishful thinking is always needed and sometimes clouds reality. My reality was that Lydia was getting better with chelation. Test results showed it too.

What else... I prayed the hardest for Lydia's speech. I wanted her to be able to communicate with her sisters. I rented the Sara Rosenfeld Johnson DVDs and watched them with my sister and another speech therapist. I did oral motor training with Lydia. BUT AGAIN... if I could have gotten Lydia's tone better by healing her body, her therapy would have been easier and more effective. I would definitely educate myself on Sara Rosenfeld Johnson's techniques. Our kids have low tone -- everywhere! Figuring out what finger foods promote better jaw strength is worth it.

OK - flash forward. I used flash cards using the quick flash technique taught by NACD (the National Association for Child Development) to teach Lydia how to read. We kept it positive and made it fun. In first grade Lydia wasn't keeping up with her peers so I pressed our cranial sacral doctor / DO for what he does with Alzheimer, Parkinson or patients who are neurologically disordered. He prescribed Chinese memory herbs. These made an immediate impact. When I accidentally ran out and Lydia didn't get these, her teachers didn't know what happened. I did. I haven't run out since.

Lydia made huge gains in the last two years. First, she started ginkgo. Please read Andi's post on ginkgo and why it is so important to people with Down syndrome. The Chinese herbs have ginkgo also. ADD (Attention Deficit Disorder) was a HUGE problem and if you can't focus in school, it's not easy to learn. We started Neurofeedback, which has helped tremendously. This didn't produce results quickly, but it has allowed her brain to work much better. The book, A Symphony in the Brain is a great book to understand neurofeedback. It is easy to read and written by a reporter, not a scientist. Maybe ask a friend to buy it from Amazon, highlight it and then just read the highlighted parts.

We rented a hyperbaric chamber this summer to determine if Lydia is a "responder" to this treatment. Hyperbaric Oxygen Therapy has had huge success in healing for many populations. The research is fascinating. Lydia responded very well and I think the hyperbaric made a world of difference in her ability to organize language. I feel I could have spent years trying to get her to organize her thoughts to the degree that the hyperbaric did in one month. I know that sounds inflated... but her thoughts just started to flow like my typically developing children after the hyperbaric treatment. Her tone also improved which allowed for better articulation.

My other piece of advice is to support your spouse as best as you can. It's not easy raising kids. Raising a child with special needs is even more difficult. Everyone is doing their best... moms and dads alike. Love, compassion and understanding for your child, your spouse and yourself will help everyone in the healing process.

With love and hope and joy,
Jane

Here's a video of Jane sharing her story at the Down Syndrome Track at the AutismOne Conference in 2012. Lydia speaks as well. The Dawn of a New Decade

Monday, October 3, 2011

Meet Lydia

I'm pleased to share with you a book review by a beautiful girl named Lydia, who is 9 years old and in 3rd grade. Lydia takes tap and jazz dance class, attends Girl Scouts and is excited basketball will resume in a few weeks. She loves to swim, go on scary rides, and have sleep overs. Her best friend is Leah. Oh, and Lydia has Down syndrome --T21. In this blog post Lydia's Success Story, Jane, her mom, explains to us what she feels has been most successful to help her child thrive. I'm excited for us to learn from her!

If you have trouble viewing, you can click here as well:
http://www.youtube.com/watch?v=rnT-tKp7JMg

Thursday, May 26, 2011

Six Year Old Mac Austin: In the News

Here's a link to a news story that was done on Mac Austin, a six year old with T21 who is on the Changing Minds Foundation treatment suggestion:

VIDEO: Researching Down Syndrome 10pm 5/12/2011

You can also try this link if the play button doesn't work.

http://www.nbc15.com/video/?autoStart=true&topVideoCatNo=default&clipId=5846095&flvUri&partnercli

More about Mac Austin:

Meet six year old Mac Austin. His mother, Lexy, found out about the Changing Minds Foundation treatment plan from a Google search. Her interest lead her to the CMF conference which she attended last July with her mother. Bursting with lots of new information, they were both very excited to get back home and start Mac on the protocol. They have seen some major changes in him and are excited to share this information with the DS community.

According to Lexy, Mac went from using one word to communicate before the protocol, to using three and four word sentences. Mac is keeping up with his first grade classmates in learning his spelling words -- six words a week! Last year it took him two weeks to learn one sight word!!

He is acknowledging when people speak and saying, "Hi!" in response. He's also asking questions and initiating conversation.

"He is engaged now, has better eye contact, he is just here with us!" says his mom. He is playing and interacting with his friends at school, a skill he used to have and lost during his regression over the last two years.

Mac can dress and undress himself, which he could not do before the protocol.

His language continues to improve. He is saying words and phrases that he has never said before like:

"It's Griffin's turn."

"Mom, put me to bed, please."

"Turn computer off."

"How about that one?"

Mac takes Prozac (started June 1st, 5mg), Ginkgo Biloba (started Aug. 1st, 160mg), and Body Bio Balanced Oil (started end of Aug. 1tsp). They will be adding the PC soon. Mac is 43" tall and weighs 48 lbs.

Video of Mac reading a book.

Cure for Down Syndrome?
Changing Minds Foundation Protocol
Jett's Complete Supplement List
Gingko: The Hows and Whys for Down Syndrome
CMF Protocol: Prozac

Jett "Reading" at 16 Months

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