To keep the language momentum going I have made Cate a word board so she and everyone in the house can see her progress. I believe this will help motivate her to try new words. I got this idea from another iahp.org mom. Thank you Jennie!
We learned last week at our revisit for Cate’s intensive treatment program that the main reason keeping Cate from talking is that “I don’t have any person to help. Listen.” She said we need to “listen longer.” This is what she told us using her facilitated communication (letter board). So mom and dad are now taking the time to listen! Wow, it has already made a big difference. It is so easy to get busy and in a routine. It takes Cate longer to answer most of the time and if I don’t take the time to wait for her response she stops trying. That is the unfortunate cycle we have gotten into at the Lewis house. No more. It may take Cate 20-60 seconds to put her word together, breathe deep enough, and coordinate the word coming out but she does it! We are very proud of her. The word board it as much for mom and dad as it is for Cate. Sister Charlie is also getting involved. It is a lot of fun. Cate said the board is “good.” She used her verbal words to tell me!
I am fully expecting the board to be full very soon!
The next big project is the civil code (a clear responsibility, privilege, award, taxation system). This will be for both girls. I will put it up here when I get it together. We will use poker chips as “money” to earn, lose, and spend. This is a big part of iahp.org’s social program and my girls are definitely ready.
We just completed our week in Philadelphia at iahp.org for Cate’s revisit. Cate is doing so wonderful! Some big goals for the next 6 months are language development (start speaking more), using the correct muscles to crawl (using her extendor muscles more than her flexer muscles or her gluets more than her hamstrings), and of course seizure free! Thank you to everyone at the Institutes and everyone who supports us along the way. Praise God for all this young lady has accomplished.
Cate has been using facilitated communication for almost 1 year now. Her letter board allows her to express her feelings, needs, and wants. It is such an amazing step in her process and gives her a voice. (She is also verbalizing more words every week.) She is 3.5 years old.
During a video call with her intensive program advocate from the Institutes for the Achievement of Human Potential (www.iahp.org) she asked to write her a letter. Her exact words were, “I have been meaning to make you a note.” Today Cate wrote her first letter to Rosalind, her advocate of 2.5 years. Cate was specific that she wanted it to be a written letter that we put in the mail, not an email. Cate “typed” out the words and I wrote it on paper until she was happy with the final letter. Now she wants to write letters to her grandparents and other friends and family. I am so proud of her!
I am not sure where her obsession with Acapulco, Mexico came from. She said she read about it in a book. It will be interesting to see where she ends up deciding to go when she starts walking. This is some great problem solving.
After writing the letter she helped me address, stamp, and mail the letter.
If you would like to write Cate a letter send me a message for contact information. She would LOVE to get letters from all her friends and supporters. She can also write you back.
I have had several people ask to see an updated video of Cate crawling. She is doing great, we are incredibly proud of her! She is consistently crawling 300+ feet each day. I can’t wait until she gets her assisted gravity track and can start creeping! Hopefully we will have it next week.
Right now she is crawling the mat(s) length at least 10 times before she gets her reward (reading a book, spinning in the air, etc.).
Cate is 3.5 years old and about 29 lbs. I would have a hard time crawling on my stomach as much as she does, it is a lot of work. Go Cate!!
Cate is doing amazing with her physical program. She beat her recent record for daily crawling 2 days ago, 402 feet is her new record! It was only 328 feet 2 weeks ago. She has the crawling bug. This is all she wants to do. If we are holding her she kicks her legs and fusses at us until we put her down to crawl. She is even preferring to crawl longer in between books because she doesn’t want to break to read her next book. This is a huge difference! We should be getting her assisted gravity environment in the next week to two weeks. I will definitely post photos and a video when we get it all set up.
She is reading about 3-4 new books each day depending on the length of the book. I am working my way through the children’s nonfiction section of our library so there are a lot of short chapter books she is now reading (about 150-200 pages) with larger text. I am not sure what we are going to do when she has read through the local library. Our wonderful nanny/helper is teaching Cate and Charlie Spanish so maybe that will be the next books we will need to find in abundance. She is currently reading and being read simple Spanish books.
Both girls are growing a lot! They have grown about 3 inches in the past 7 months. All of their clothes are too short.
Unfortunately Cate had her first seizure in 10 months this month. She had the seizure while in bed. I went to check on her at 10pm and she was seizing. We are not sure how long she had been seizing for… Because she was full into her seizure it took a lot to get her out of the seizure including a trip to the ER and a transfer to the Denver Children’s hospital ICU. Her follow up EEG the next day looked great and we were able to go home 24 hours later. We now have a seizure alert pad under her bed and it detects repetitive motion alarming us if she has a seizure while in bed. It works too! I recommend this product http://www.emfit.com. Cate has had 2 small seizures following her large seizure but she seems to be doing very well now. 10 months seizure free is still a huge accomplishment!
We are enjoying the Colorado winter and snow that comes and goes. Although this mom is getting a little tired of winter. At least the sun comes out almost every day here.
I know it has been a long time since I have provided an update about Cate and our family, I am sorry. We are doing great! In July we moved to Colorado from Indiana, Ryan graduated from his dental residency and started working, the girls are growing and learning a lot, and most of all Cate has been seizure free for 6 months!!
Here is her new progress video that I put together for her revisit to the IAHP in Philadelphia in 2 weeks (www.iahp.org). We are excited to have Cate evaluated by her specialists and learn her new program. After our last visit in March Cate started a new oxygen program and her tone has reduced dramatically. She is so loose now that she has had to build up her muscles again in the proper way. Therefore her crawling progress actually slowed down, but she is back at it again!
More updates to come. Than you for all of your support and prayers.
I have been talking a little about facilitated communication (FC) with Cate and I wanted to share an update. We started with the FC board after our last trip to http://www.iahp.org in March. It is taking time for mom and Cate to get used to the board but she is doing really well! (This is not to replace her speech but to help us understand her while she works on getting her voice.)
Cate’s Facilitated Communication Board
Her first big breakthrough was in April. Not only did she show us she could use her FC board well she also showed us she is reading and comprehending advanced material. She told me, “I learned every ramp is an inclined plane.” Her exact words. Because she can read so much faster than I can I had to go back to the book and find the section she learned this from.
Earlier this week she read several books in a series titled “How to Care for Your First Pet.” Every animal we read about she tells me she wants one as a pet. After reading the book about rats as pets she told me she would like to have a rat. When I asked what she would do with the rat she said, “sit and watch the rat play on a map, then feed the rat carrots.” 14 words!! This took her a little while with a few breaks but she was determined. Each week she gets faster on the board.
Cate and Charlie are reading about 35 books each week from the library. Because of Cate’s vision the letters in the books need to be 16 pt or larger (about 3 mm). We have officially read all of the advanced (2nd-5th grade level) books at our small local library and now we will have to go to the larger library branch in town. But first I need to find that one book that didn’t make it back into the library basket and is missing… Hmm, wish me luck.
I am encouraged by you readers and my friends! I have had several people with hurt and well children that are now looking at the programs they can do with their kids at home after reading about Cate’s successes. There are still a lot more to come but we are so incredibly proud of both of our kids!
Cate crawling to the books she will read today.
We have been doing Cate’s new program for about 6 weeks and there is a big difference! Besides learning that Cate can speed read commercial books independently (about 35 new books/week) her body is changing. Cate’s muscles are very tight, especially in her upper body. Typically kids with cerebral palsy that have high tone get progressively worse with regards to tightness. Although Cate is very tight she has slowly loosened since we started the program with The Institutes for the Achievement of Human Potential (IAHP) about 2 years ago.
She can now open her hands and leave them open, she used to always have her hands closed with her thumbs under her fingers. She can sit in a high chair or carseat, she used to arch her back and scream in pain constantly. She can put her arms down by her sides, she used to have her hands up by her ears with her elbows out all the time. She can push herself up and crawl on her stomach, she used to hardly be able to pick up her head.
But we have never seen such a change as we have over the past 5 weeks. During our recent revisit to the IAHP in March she was programmed to start a new oxygen enrichment program that consists of her breathing oxygen and carbon dioxide at an 80% 20% ratio for a short time several times a day. She is so loose that she is having a hard time sitting up in her high chair and carseat. She fell asleep in her carseat for the first time since she was 6 months old! She is letting us do her physical patterns with ease and a smile. Cate is loose, loose, loose! This is amazing but also a little shocking because we have only known her very tight. As one of her doctors at the IAHP said she will have to get used to her new “body”. So now the work begins for her to build up her muscles properly. We are very hopeful that the “80/20 masks” will continue to reduce her tone along with all the other benefits of getting more oxygen to her brain including improvement in speech, manual ability, sensory issues, and her crawling!
She told me today, through facilitated communication, that she loves her new masks and how it makes her feel. I don’t think I have ever seen her this happy throughout the day. Praise God!
Thank you to the people at the IAHP, http://www.iahp.org.
We had a wonderful trip to Philadelphia last week! With the exception of myself and eventually Cate getting the flu. Although Cate did much better than I did and her symptoms were extremely light. Ryan stayed healthy and took care of us all!
Cate’s evaluation day was amazing as always. I am always so impressed with her progress. The parents spent 2 days in lecture series IV. We learned more about the physical program, seizures, and the social program. It is amazing to see how the Institutes focuses on the entire child. In order to graduate from their program you must be physically, intellectually, and socially at or above age level. They focus on all of these aspects of a child’s life from day 1! We met a young brain injured lady while we were there that completed a triathlon in the fall. She was a very sweet, intelligent, mature girl.
The last two days of our visit involved us learning Cate’s new program for the next 6 months. All I can say is crawling, crawling, crawling, and more crawling. We will be spending a lot of time on the floor. She is also going to be doing a new oxygen enrichment program added to her current one. We have some big goals for our next revisit in October and I am confident she will reach them all!
Her intellectual program is becoming much more advanced. Since her eye sight has improved so much we can now try to show her commercial books. Before the print size in commercial books was too small for her to see. Remember, she was completely blind less than 2 years ago. Since she can read independently and speed read (about 3 seconds per page of words) I am really hoping commercial books will work well. I don’t think I can make enough homemade books to keep up with her. I just went to the library and got a huge stack in the 3rd-4th grade level. We will be continuing with her math program and adding problem solving and adding in encyclopedic knowledge to her bits of intelligence.
One expert we saw on the last day taught us facilitated communication. Cate uses a letter board (with arm assistance) and can write out sentences. She did very well with the expert and we learned her favorite books are science books. It may take a few weeks for her mom to learn how to properly help her with the board but I am confident we will succeed and will learn a lot more about what Cate has to say!
Being awarded the certificate for completing the requirements of the Child Brain Development Course at the Intermediate Parent Level. This includes completing lecture series IV and over 8,000 hours of brain development program.
We learned a lot yesterday during Cate’s evaluation. She knows much more than we ever realized!! Cate can read (that we knew) but she can also read independently, read and understand words she has never seen before, and relate words to her environment. She is only 2.5 years old! She got her understanding victory and her crawling victory!
We do not test her at home so when we come to the Institutes for her evaluations we learn where she is at neurologically. Testing takes the fun out of learning, that is why they ask us not to test right now.
Cate loves her intelligence program! In the past 6 months Cate and Charlie have learned to read 1,500 new words, 69 new books, 650 bits of intelligence, they have learned numbers 0-100, and addition.
Cate and Charlie doing their intelligent program at home.