says Cuevas Medek Exercise

We've been away from home for over 10 days trying a new form of physical therapy for Sripathi. Thanks to Aubri from www.littlebearsees.org who had tried this form of therapy for her son. She gave a good idea about the therapy and how it had helped Lukas. So here we are now in New Jersey trying the same for Sripathi and learning a home program from Azriel to continue back at home. I have to say some of the exercises were like magic when Azriel could make Sripathi sit unsupported for a few seconds. The best part about Medek is the child's reflex develops, it was amazing to see Sripathi showing signs of discomfort and shock when he knows that he might fall or lose balance in certain positions.   

We may not be able to perform all the steps that Azriel did with Sripathi, but I'm sure we have a good set of exercises for our home program. And in the next 2 days we'll have everything planned out. It is tiring like any form of physical therapy but we've found that even when Sripathi is tired he can still manage to show signs of holding his head with some support.
I'll come back with further details on the goals and take aways from this program.
You may visit www.novogrow.com for details about Medek therapy services provided by Mr.Azriel Novogroder in NJ.

says Living through Sensory Integration

The "Sensory processing" has been discussed at least once a week with parents, therapists, doctors around children with special needs. I always thought that sensory processing was necessary for a child or for that matter any human being to learn the world around them, learn how to live in this real world.
So all I was trying to do was a routine, a pattern, a therapy with sensory integration with my son. And recently I heard the TED talk by Dr. Jill Bolte Taylor (apparently this talk was one of the 20 most watched) and also I watched the entire soul series show of Dr.Taylor with Oprah.
Dr. Taylor a neuroanatomist brain scientist and survivor of a stroke that damaged the left hemisphere of her brain. I want to read her book "My stroke of insight", but I didn't want to wait to share what I heard.

Truly as parents and care givers we have provided the sensory input that is currently helping our special children to move on in their lives. But I hope this could extend to all care providers, just about anybody they meet in their lives. And I'm sure we can help with in this process. After listening to Dr.Taylor I can clearly understand why my son behaves the way he behaves with the different people in his life. Wow! I hope you all find the time to listen to her. I'm so glad I did and the perspective I've gained is invaluable.

Here are the links
TED Talk show with Dr. Jill Bolte Taylor
http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

Oprah's Soul Series with Dr. Jill Bolte Taylor
Part 1 http://www.oprah.com/oprahradio/Jill-Bolte-Taylor-on-Oprahs-Soul-Series-Video
Part 2 http://www.oprah.com/oprahradio/Oprahs-Talk-with-Jill-Bolte-Taylor-Part-2-Video
Part 3 http://www.oprah.com/oprahradio/Oprahs-Talk-with-Jill-Bolte-Taylor-Part-3-Video
Part 4 http://www.oprah.com/oprahradio/Oprahs-Talk-with-Jill-Bolte-Taylor-Part-4-Video

If you feel pressed for time please watch the last 2 parts of the series at least!

says Music Therapy

We started Music therapy long back for Sripathi but unfortunately he could not continue to receive the same with a therapist as it was not feasible to measure his progress as he was the least interactive. So we ended the service with a therapist. But as we found that we son loved music even otherwise we decided to keep classical music running around the background at home. Thanks to WRR serving the Dallas/Fort worth area at 101.1 FM!

It was not long since we started this method and one day Sripathi's Vision Coordinator Ms. Duffy visited him to initiate services through DARS Division for Blind services. Listening to the radio, she asked if Sripathi enjoyed classical music. I told her the truth that we cannot quantify or qualify in anyway but we definitely know that he loves music by his body language and his mood. His hands and legs are active and he is either smiling or shows signs of listening.

It's over 100 F here in Dallas, he is happy with both the air conditioner and diaper on. And of course classical music on the ipod.

 

 

  
Thanks to DARD DBS and Ms. Duffy who sent Sripathi several CD's of Classical music organized based on categories such as relaxation, concentration, inspiration and such. I uploaded these to the ipod and he enjoys them.
These CD's are from ABT Advanced Brain Technologies. Please visit their website http://www.advancedbrain.com/ to get more information on these music therapy CD's.
  

Music not necessarily classical or folk or instrumental just anything thing that makes sound, the dangling of the beads in rhythm is also nice to the ears and every child's ears rather everybody's ears deserve good music.

Here's to my handsome boy loving music and loving milk... forever.

 

Here are some resources to receive formal music therapy in Dallas Metroplex

1. Hugworks Music Therapy http://www.hugworks.org/

2. Heartbeat Music Therapy by Janice Lindstorm http://topmusictherapist.com/

Janice hosts a Music therapy show on Blog Talk Radio every Friday at 12 noon Eastern/11 am Central/10 am Mountain/9 am Pacific/1700 GMT.

3. Southwestern Music Therapy http://www.southwesternmusictherapy.com/

says happy birthday West Penn School for the Blind

We are happy to say that we were honored to meet Dr.Christine Roman-Lantzy and Dr. Alan Lantzy last week. Dr.Roman reviewed Sripathi's CVI Range and gave us valuable suggestions on intervention.

As part of the 125th anniversary of Western Pennsylvania School for Blind Children we had the wonderful opportunity to attend the CVI visions of Change conference. We learned how to adapt our current intervention to be even more beneficial for our son. They had organized for lectures by Sandra Newcomb on how we can ensure our children get the right intervention when they go to school. A very moving, emotional and inspiring speech by Jeni Stepanek. Ofcourse a very informative lecture on Neuroplasticity by Dr. Al Lantzy.

I was also given a great opportunity to share this blog and all the intervention methods we are trying at home for Sripathi. So yes Little Idea Log was also part of the conference. And I’m so happy that I could share those moments with Aubri who represented Little Bear Sees. It was an honor to be featured in their book "Little Bear Sees" An amazing resource book on CVI for parents by parents. Please visit Amazon.com or Barns and Nobel’s for purchase a copy of this book.

Every day we learn to teach our child and everybody we meet in this journey has taught us something. So thanks to all. And especially for the past couple of days I want to thank Dr. Christine Roman and Ms. Beth Ramella for considering us and giving us this chance to be a part of such a significant event.

says Mother's day with Mom made Blankets

Okay we all know it; every day is Mother's day. Yet to make it special and memorable I sewed a gift for my son. It was a textured toy blanket. I had bought McCall's patterns on sale and loved this modified blanket. It’s easy to take anywhere especially good to sort of cover him when he is seated on the stroller. Say stroller blanket. The textures are great, made with different fleeces, rick rack ribbons, satin ribbons and stuffed with batting. Well the appliques are missing for the eyes and nose though... they will come shortly.

If anyone wants to try this here is the pattern nmber - McCall's Pattern M6525 Baby Blankets alligator bear dog cat lion.

Last month I made this weighted blanket and it servers so well during my son's nap times.
Especially when he is sick and needs rest. The blanket weights 10% of his body weight and thus provides a calming pressure. I have to thank Darlene who taught me how to sew and taught me with this first most beneficial project. I used prequilted fabric on one side and fleece on the other sewed several columns and rows and filled them with pellets and sewed them in pockets.

These were the work in progress pictures. Here I've already completed making the columns, then I start filling in with calculated amount of beads in each column and pin them in place and them sew a row across then I continued to fill the next row and sew it in place.

A closer look at the pockets. May look like too much effort, But it was really easy i made in within 2 weeks and that too this is my first ever sewing project. I felt so good because my son really benefits from this.

says Hadley.edu

Resources are mandatory when it comes to raising a special child. By resources I include every person, doctor, diagnosis, company, therapist, equipment, course, school that helps us in any way. Although my son's therapists help my son and teach me to help my son, the vision therapist gave me a sound advice on taking courses from Hadley. I recollect the saying "Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime". What my VT suggested was the same.

 

So when we moved to Dallas, that is just what I did until we could settle and get ECI restarted. I went to the Hadley's website and browsed the family education courses. http://hadley.edu/showCourseListing.asp?program=FE

 

Later I called the Student Services to help me determine which would be the right course for me as a parent to a visually impaired child. They helped me enroll into the basic course which was online; the materials arrived in the email with a note from my faculty. I could call or email my faculty if I had questions and once I’ve completed the course I submitted my assignment which came back with a grade and more importantly wise and honest feedback that gave me better insights on how to help my son. From then on I've been a proud student of Hadley.edu. I've completed over 5 courses online. Still taking new courses and I'm happy that what I learn is not just to pass some test but to actually see myself use it to help my son.

Let me tell you the best part about Hadley.edu

1. The courses are so systematic and precise and gives you practical methods that you can learn and apply in everyday life.

2. You can take the courses online, anytime, anywhere.

3. They are absolutely FREE

4. The faculty is just Amazing!

says lets turn on those lights

As part of the wonderful Sensory Learning Kit by APH provided to us by our TVI from the school district were the switches and the interruptors. We were so excited to try the switches with lights because lights are great appitite or hot spots from children with CVI.

The set up - if you want to do this activity during the day

1. The switch and the intrruptor provided in the kit.

2. Christmas lights

3. Red stuff, if your lights are not red then wrap them with mesh or net like fabric

4. More Red is good, like a red car screen

5. Try to make a black background using black table cloth and board pins.

says Sensory Integration really Works!!!

I used to try several things with textures, colors, smell and motion with my son but nothing so far had an impact maybe they did but nothing that brought any change in his attitude or reaction or response to the objects.
But as my vision therapist kept telling me to keep trying anything and everything we can possible get our hands on and who knows what could trigger his attention.
And really I’m glad I followed her wise advice and after 2 years and 3 months my son finally touches something and wants to keep going at it and to top it off he looks in the direction of the object, sees it and reaches and touches it.
God I feel so thankful now. I don't suppose there is a better word to say how happy I feel that my son could intentionally do something.

Okay this is what we tried, I just bought these microfiber dusters from Wal-Mart like on the 26th of Feb and on 27th I put the duster over a piece of black fleece fabric and left it near him, I never really hoped that he would touch it, by amazingly he brought and held his hands out over the duster and dropped his palm right in the center and started caressing it. Then he rolled over and tried more. oh boy what an achievement.


Here's to his success.

says Sensory Integration with Water

I've heard a lot about how children with CVI like to play at a water table. That water helps calm them down and helps them focus their attention.
Although my sons loves his Aqua Therapy and he loves to take bath and shows signs of anticipation when in the bath tub, he never liked the idea of playing at a water table.

I tried to add red food color to the water yet i did not get much of a reaction or response from him, he just wanted to get his hands out of the water.

Today I remembered that he likes to be scrubbed with a pouf when taking his bath and was wondering what could give him a similar sensation when playing at the water table and then i found the mesh bag that clementine oranges come in. So i just ripped them off the packaging and put that mesh in the water and amazingly my son started feeling this mesh under the water and he started moving it around. This is a great achievement.
I'm so proud of him and would love to share a video of his success.

says Ideas on Sensory Integration

The basic thing that I noticed with my son and his sensory integration concerns were the fact that he does not touch anything. There are several instances where he would pull his hands quickly towards himself when we make him touch a tactile object.

Our therapists suggested several things to provide him sensory input, the first thing we used was a therapy ball, it was a medium size ball and we still use this ball to rock him back and forth and also side to side. During the initial days she cried a lot when we put him on his tummy on the ball, but nowadays he has learnt to lift and in a small way balance his head when placed on the ball on his tummy. He actually enjoys rocking on the ball.

The second thing we started was a simple brush when he was around 15 months old. And till today I still use a therapy brush to brush his legs, arms and back after his bath. He reacts well to the brush, his body immediately tightens, he tries to pull his arms and legs closer to him and he even opens his mouth wide.

The next thing we tried was a small massager, the kind of thing you can get for say less than $10. We still use it, but my son does not show much of a reaction to it like I expect him to show signs of liking the mild pressure of the massager or he shows signs of discomfort but every time the reaction is varied and really does not come out clear.

We then moved to using rice and beans. I filled a large bowl with uncooked rice and some beans, we help Sripathi place both his feet in the bowl of rice and beans and move his feet around and press down on the rice, and also we pick up a hand full of rice and pour them over his feet. Again these kinds of tactile inputs are easier on him on some days. But there will be days he does not want anything to do with tactile objects. I will fuss and want his feet out of the rice as quickly as possible. I learnt that this is a characteristic of children with CVI. There will be days they cannot perform their usual and so we take it easy and give him a break or do something that he likes like reading a book.

I guess every child enjoys this vestibular activity, "The Swing". We live in an apartment so we don't have the privilege to hook up a swing to the ceiling so instead we went out and bought an exercise bar, I think from Wal-Mart. Since we don't carry many tools in our house we called the maintenance guys from the apartment community to help up nail the exercise bar between the door way to one of our bedrooms. We hung the Swing, a common little tikes swing from Babies-r-us on the bar. It worked out well and sripathi likes it. The swing as such provides sufficient sensory input, in addition to it my OT had suggested to ripe one layer off from a cardboard box and try to have Sripathi feel the corrugated side of the box. This is a very cheap and effective sensory tool. What we try to do is hold up the corrugated side of the board at the height were his foot can reach when he is swinging. So he will get to rub his feet over the corrugations as his swings back and forth. As this is again a very tactile activity we give him a break and stop using the board when he fusses.

Later my Speech Therapist provided Sripathi with a massager that looked like a purple Bat. We use this over his cheeks and throat to provide oral motor therapy. He likes it and relaxes to the soothing wings of the vibrating bat over his cheeks.
We also bought him a spin brush. With this brush we can say that his cooperation to brushing his teeth has increased by 10%. Apart from these we sometimes use a vibrating pillow while placing him on his tummy.

A recent addition to Sripathi's toy chest is the tactile ball, although I had this ball we never really played with it because sripathi did not like the feel of it. Later I received this link from wonder baby website. They have a wonderful video on how to play with the tactile ball and ever since we saw this video I play the pull - n - snap - way with Sripathi and he seems to tolerate the feel of the ball and even tends to look at it. Please visit http://www.youtube.com/watch?v=WY9g7l43LJ8&list=UUWOZFOIF4IGqCbfFXhmLKbA&index=1&feature=plcp

We can play basketball! I just bought this small basket and soft ball from party city for probably 50 cents each. We sit in front of the mirror and I use hand over hand method to help Sripathi hold the ball, then placing the basket right in front of us I tell him "let’s put the ball in the basket" and then we throw the ball in the basket. I should say that the yellow basket in the black background (We had black towels, but you can simply use black trash bag)must be appealing that sripathi did give a good look a couple of times.

says Cortical Visual Impairment: Visions of change conference in June

Western PA School for the Blind is organizing a conference on CVI called the visions of change as part of their 125th year celebration.

Please visit their website for more information
http://www.wpsbc.org/18761083101838763/blank/browse.asp?a=383&BMDRN=2000&BCOB=0&c=55228&18761083101838763Nav=%7C254%7C&NodeID=282

Little Idea Log will also be there for a presentation. We look forward to meeting more parents, therapists, specialists and many more good resources.
More about this in the future.

says iPad Apps

The iPad is a genius idea. Thanks to Mr. Steve Jobs.
Today I'll be reviewing some of the iPad apps that I use with my son. He is currently 2 years old with severe hypotonia, seizure disorder, macrocephaly and CVI. Although I have to mention that we are not sure whether it’s due to CVI or severe Hypotonia and motor weakness that my son is unable to touch the screen. I try the hand over hand and hand under hand but nothing seems to encourage him to touch the screen. Yet we keep trying. If anybody else has any suggestions for us on this regard it would be really great!

Please Note: Some of the apps I’ve reviewed have movement, colors and brightness which may induce seizures in some children so please use your discretion in deciding which apps would be safe for your children. Also make sure you move the iPad away from the child while changing from one app to another because the sudden change in contrast or brightness will cause discomfort to their vision or may even induce seizures. And finally don't leave a child unattended with an iPad!

1. Peekaboo HD by Gotclues, Inc
Star Rewards * * * *
This is a typical barn animal’s app recommended my son's speech therapist. The animal make sound from behind a hay stack and on the touch of the screen the hay moves away and only the animal is focused on the screen. My son is attentive 6 out of 10 times. We use the hand over hand method to help him touch the screen to see the animals behind the hay stack.

2. iLove Fireworks Lite by Fireworks Games
Star Rewards * *
Well I still have this app and occasionally show it to my son. He is not so interested probably because the screen totally black and fireworks only occur when you touch the screen. And touching the screen it a little difficult without guidance for my son. I have to say that the fireworks that appear are not as bright as I expected, I believe that brightness could motivate my child a little more.

3. Art of Glow by Natenai Ariyatrakool
Star Rewards * * * * *
This is one of the best apps and my son's attention is 99%. You should definitely try it. The reason it is so good is that not only are the colors bright but there is constant motion in the images that we draw on the screen. As we know that children with CVI require movement in the object they see or we'll notice that the child we move his/her head or body while trying to look at things.

4. Pandora Radio by Pandora Media, Inc
Star Rewards * * *
Wondering why I'm mentioning some radio app here? Well because they have stations that play children's music. This app could be played in the background while trying to show some visual app to the child. I'll mention about playing Pandora on the apps that are otherwise only visual as I discus them further on in this list.

5. ChoiceBoard-Creator by Techno Chipmunk
Star Rewards - Not Rewarded Yet
This will be a great app only when the child is able to cognitively touch and choose what they prefer or want. As currently my son does not cognitively want something or express his feelings or even touch any object including the iPad screen I’m unable to reward this app. But I'm sure this will come handy someday so I have downloaded it. It’s easily customizable. we can take pictures of the choices using the iPad itself and we can manipulate the number of choices we want to present to the child. Can be used in place of a communication Board when necessary.

6. Tap-n-See Zoo Lite by Little Bear Sees
Star Rewards * * * *
Nicely designed app focusing on children with CVI. I use the Lite version with my son mostly when he is lying on his sides. He liked to watch the animals move on the screen, more so because it was a black background and the animals were red (the preferred color for children with CVI) When his hands or fingers accidently touch the screen the animals move towards the direction of the touch and if my son's extremities accidentally touch the animal itself then the animal enlarges in size and we hear a rewarding sound like the laughter of a child or applause. The rewarding sound was attractive for my son and motivated him to keep his hands and fingers closer to the iPad screen.

7. Piano Free with Songs by Better day Wireless
Star Rewards * * * * *
My speech therapist recommended this app. And Sripathi liked it instantly. Because of the black and white contrast. There were several instances he touched the screen to play music. Not sure if he touched the screen anticipating hearing music or just trying to reach and touch the contrastingly looking screen. Sometimes I feel it’s the motivation of the rewarding sounds because I know he likes to look as black and white books (the one I show my son is called "Look Look! by Peter Linenthal") though he attentively watches every page of the book he is not motivated to touch them. Whatever be the reason I'm glad he is motivated to look and reach. Here is a video of my son using the piano app.

8. finger drums! by Indigo Penguin Limited
Star Rewards * * *
This is a very recent app that I’m trying to use with my son. I like the fact that the drums move and vibrate to the touch; they are again in contrasting black and white. I would say with consistency he would show the as much interest in this app like the piano app.

9. Cartwheel by Chris Allert
Star Rewards Not Rewarded Yet
This is an app that will go great with Pandora, preferably a station that plays classical music. I use Andre Rieu. Only thing I would have liked is if the colors were brighter or if the lines or images that appear could have been thicker. But I guess it would be a nice app to use when the room is dark and the child is in Active Alert state. 10. Ooze by Collective Cognition Star Rewards Not Rewarded Yet This is a nice app similar to "Art of Glow". But this is more like a lava lamp. The color keeps changing and oozing on the screen. Also you can drag the colors in different direction. This again is a great app in combination with one of Pandora's classical music stations.

says Good Books

Here is a list of Books that helped us through our journey with Sripathi. Some of these books were recommended by our Doctors and Therapists.
Books on Epilepsy
Ketogenic Diets: Treatments for Epilepsy and Other Disorders
Authors - Eric H. Kossoff M.D., John Freeman, Zahava Turner, James Rubenstein
But Online - http://www.amazon.com/Ketogenic-Diets-Treatments-Epilepsy-Disorders/dp/1936303108/ref=sr_1_2?s=books&ie=UTF8&qid=1326341772&sr=1-2

Seizure and Epilepsy in Childhood - A Guide
Authors - John M. Freeman, Eileen P. G. Vining, Diana J. Pillas
Buy Online - http://www.amazon.com/Seizures-Epilepsy-Childhood-Hopkins-Health/dp/0801870518/ref=sr_1_1?ie=UTF8&qid=1326341691&sr=8-1


Books on Visual Impairment
Cortical Visual Impairment: An Approach to Assessment and Intervention
Author - Christine Roman-Lantzy
Buy Online - http://www.amazon.com/Cortical-Visual-Impairment-Assessment-Intervention/dp/0891288295/ref=sr_1_2?s=books&ie=UTF8&qid=1326341867&sr=1-2


Books on Therapy
The following book can be used for several types of developmental delays.
Teaching Motor Skills to Children With Cerebral Palsy And Similar Movement Disorders: A Guide for Parents And Professionals
Author - Sieglinde Martin
Buy Online - http://www.amazon.com/Teaching-Children-Cerebral-Movement-Disorders/dp/1890627720/ref=sr_1_1?s=books&ie=UTF8&qid=1326342000&sr=1-1


Books on Sleeping/Napping
The 90-Minute Baby Sleep Program: Follow Your Child's Natural Sleep Rhythms for Better Nights and Naps
Author - Polly Moore Ph.D.
Buy Online - http://www.amazon.com/gp/product/0761143114/ref=oh_o01_s00_i00_details

True Stories for inspiration and ideas
Loving Rachel: A Family's Journey from Grief
Author - Jane Bernstein
Buy Online - http://www.amazon.com/Loving-Rachel-Familys-Journey-Grief/dp/0252074831/ref=sr_1_1?s=books&ie=UTF8&qid=1326342215&sr=1-1

Rachel in the World: A Memoir
Author - Jane Bernstein
Buy Online - http://www.amazon.com/Rachel-World-Memoir-Jane-Bernstein/dp/0252076826/ref=sr_1_1?s=books&ie=UTF8&qid=1326342250&sr=1-1

Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children
Author - Gina Gallagher, Patricia Konjoian
Buy Online - http://www.amazon.com/Shut-About-Your-Perfect-Kid/dp/0307587487/ref=sr_1_1?s=books&ie=UTF8&qid=1326342281&sr=1-1

Special Kids Need Special Parents: A Resource for Parents of Children with Special Needs
Author - Judith Loseff Lavin
Buy Online - http://www.amazon.com/Special-Kids-Need-Parents-Resource/dp/0425176622/ref=sr_1_1?s=books&ie=UTF8&qid=1326342334&sr=1-1

The Story Of My Life: The Complete And Unabridged Edition
Author - Helen Keller
Buy Online - http://www.amazon.com/Story-My-Life-Complete-Unabridged/dp/1438278314/ref=sr_1_6?s=books&ie=UTF8&qid=1326342373&sr=1-6

When Bad Things Happen to Good People
Author - Harold S. Kushner
Buy Online - http://www.amazon.com/When-Things-Happen-Good-People/dp/1400034728/ref=sr_1_1?s=books&ie=UTF8&qid=1326342471&sr=1-1


Books to use with children with CVI
I found all these books on Amazon.com.
My son who has CVI and is 2 years old likes all these books. I started introducing him to books when he was 7 months old.

Where Is Baby's Belly Button? A Lift-the-Flap Book [Board book]
Author - Karen Katz

Fuzzy Bee and Friends (Cloth Books)
Author - Roger Priddy

Look, Look! [Board book]
Author - Peter Linenthal

Fluffy Chick/Snowy Bear (Cloth/Board Books Packs)
Author - Roger Priddy

Daddy and Me [Board book]
Author - Karen Katz

Where is Baby's Mommy? [Board book]
Author - Karen Katz

Squishy Turtle and Friends (Cloth Books) [Rag Book]
Author - Roger Priddy

Hello, Bugs! (Black and White Sparklers) [Board book]
Author - Smriti Prasadam
Illustrator - Emily Bolam

Little Cloth Book of Trucks (Cloth Books) [Hardcover]
Author - Roger Priddy

Also the recordable books from Hallmark are amazing. Sripathi's Vision Therapist gifted one when we moved from Florida to Texas. He loves to listen to her voice and at the end of the book a show him a picture of him with his therapist.