It's been about a week since I posted. I have been busy making our new little friend Kailah a website. It's at www.kailahsnewlife.blogspot.com If you want a website for something, let me know, I can help and I don't charge and blogspot.com is free!
Well, Matthew is doing much better, at least he was. He went two days without any siezures last week, Now they are up to 7 today. These siezures are different. Even the sound he makes is different. They look painful but they don't affect him nearly as bad as the other ones. He's not even sleepy afterwards. He's still doing things he has never done like walking forward in his walker and laying on the floor content and play. He will also push up on his elbow and hold his head up for a long time! He's way more alert!! I have some video of him walking in the walker. I only captured the end part of his walking. He gets tired easily. I actually had to watch him because he kept bumping into thing. He is doing so much better even though he's having different types of seizures. They look the same but no jerks afterwards and no sleepiness. I beilieve they are still tonic seiuzures. He hasn't had ANY myoclonic jerks in over two weeks. Those were the seizures he had everymorning and when he woke up from naps. He is doing really great! He kicks his feet so hard when i'm holding him, I almost drop him. He can actually make a splash with both feet in the pool.`
OK.
I thought I was all alone. I felt as if USMC took my son and he was THERES! I surfed the net and found a website where some parents have sons and daughters at paris island boot camp too! I also found a website http://recruitparents.techservers.net/forum/topic.asp?TOPIC_ID=7427 that tells you everything you need to know. I even found a calandar that shows each week of training. I wasn't so happy to know that next wednesday is the tear gas chamber! They have a chat room, a message board. All kinds of stuff even regarding the best places to stay during graduation and where to eat and what to bring even a list of what NOT to say to the drill sargeants.. things like, "I heard you were Mean to my son" . Who do you think you are??? lol things like that.
I'll be posting my letters from him on my site. I also have some before pics the day he left. He has already lost 7 lbs so there's no telling what he'll look like when he gets back. Did I tell you I dreamed that he looked like Johnny Bravo (the cartoon dude) when he came home? Funny.
I have had too many dreams lately and guess what ? I'm going to be posting them too!
Charlotte
Today was a busy day. We got to finally meet a family I have been chatting with on the internet for a couple of months now. Kaihla is 13 and has SOD and a few other things. Matthew has SOD too. We took them to the pool and Kaihla had a great time in the pool. This little angel can put her head under the water and hold it! She is so fun to watch in the swimming pool. Kaihla has had a very hard life for the past 12 years but the last year has been a big change for her. She has a mom and dad that loves here and takes very good care of her. They showed up and rescued her just in time! She is a perfect little angel. The last pic is of me and kaihla on the swing. I was the first to swing on a porch swing with her! I am so tired I am going to bed early. Matthew and I are just worn out. I know they are too. We were so glad to get to meet them and share our stories with eachother. Keep Matthew and Kaihla in your prayers!
Charlotte
A Songs of Love Messenger,,, ME,, will be at the next CP meeting on Saturday, July 23rd at 1:00 at Ryan's on Pemberton BLVD. Any parent or someone who knows of a chronically ill child can come by and fill out a profile sheet to get their child a TOTALLY FREE cd of their very own. The music you should hear playing now is Matthew's very own Songs Of Love CD.
For children up to age 19. Call 601 529 1211 for more information or to hear an audio clip of the song.
Charlotte
For children up to age 19. Call 601 529 1211 for more information or to hear an audio clip of the song.
Charlotte
Here's some stuff I found from my old aol journal. I had forgotten about it. I have so many it's crazy! Matthew was an angel today. He had 4 seizures. On a scale of 1-10 I'd say they were 7. Still no myoclonics in the morning!!! I think he was just tired. WE did a LOT of traveling today. He had a doctors appointment with the endochrinologist. He seems amazed at how well Matthew is doing. He is still only on Levoxyl for a low to normal thyroid. He's 28 lbs and 3 ft tall!!! He's still on the growth charts. He's doing well and we were told to keep up the good work.
Here it is. I read it and was impressed with myself. lol
My Journey with Matthew is much like Homer's Epic Poem, The Odyssey. I was helping my son in English Literature and had to help him read it. At first I thought Oh my Lord, How will I ever be able to read this stuff! The more I read the better I understood it. Everyone has their own journey through life. Some are easy and some are difficult. The word "Oddyssey" comes from the greek word Odysseia. It means any significant and difficult Journey. I''m thinking of changing the name of my journal to Peekaboo Man's Odyssey. What do you think? Leave a comment and I'll make my decision after I have read all comments.
It is truly a very difficult journey. It's like you are fighting a useless battle with something you know you will never be able to beat but you keep going and keep fighting and pushing. Even though you know what the ultimate end will be. The good thing is that during the fighting and pushing you learn a lot, meet a lot of people and you come to understand what life is all about. You have a lot a happy times and sad times during the fight. You learn to lean on your faith in God more. Here's something from The Oddyssey. You may find it boring at first, but if you think of yourself as "Homer" and apply to your own life, you might get some meaning out of it. (Maybe not "every" word but this one really made sense when I thought of myself as "Homer").
Many cities did he visit, and many were the nations with whose manners and customs he was acquainted; moreover he suffered much by sea while trying to save his own life and bring his men safely home; but do what he might he could not save his men,
Good Night
If you have not visited my faces of angels link you should! Just go to the link box at the very top of this page and click on it. Here is some of what is on it.
Faces of Angels
I wanted to share some Angels, living and those who have already gotten their wings with all my friends that read the Journal. The First one I’m sharing is very special to us. When we joined the Yahoo support groups, Helen was the first member that really helped us a lot. Matthew was about 4 weeks old when we joined. She offered us lots of support and even called long distance to say hello and see how Matthew and the family were doing. Unfortunately, we didn’t get to meet Brandon face to face because he had already gotten his angel wings before we had joined the group. Helen chose to stay in the support groups and we are all glad that she did. She has given us some great advice concerning questions we have about our special children. The more I read about her son Brandon, the more I felt I had missed out on things when he was here on earth. He even favors our Matthew in a lot of his Pictures. Even though I never met him or saw him face to face, I feel like I did know him and I can see him when I look into Matthew’s face. Helen uses "Empty Arms" in her email addresses and I know somewhat of how she feels because I know that will be how I feel when Matthew gets his wings. Here are some wonderful poems she sent me to share with you and don’t forget to look at the beautiful pics!
WHEN I WAS 25 (By Helen Miko)
As I approach my 45th birthday, I think back upon what I thought my life would be like when I was 25. I can't help but to be saddened by some of the differences, and proud of others. When I was 25, I thought at 45, I would be married with 2 children-- a boy and a girl of course. Then, there was reality -- yes, I am happily married, but I've been pregnant 5 times, and only have one living child. And watching the torture my precious little boy endured is more than I ever could've imagined. But, in this same situation, I am also very proud -- proud because I have a healthy, beautiful little girl that I would die for. And also proud that I was given the chance to know my son, when no doctors thought that ever would've been the case when he was born. When I was 25, the thought never crossed my mind that I would ever have a handicapped child. After all, there was no children born with problems on either side of the family. But what I found out was what a blessing having Brandon was. He taught me more in his 4 years, than ever could've been accomplished if I never had had him. He also taught me how strong I really am when I have to be. You see, I used to be shy around a lot of people -- especially peers and the medical field. What I found is that I could be a ferocious 'Momma Bear' when I needed to be for my Brandon. I not only fought the health care and educational systems for what was right for him, but I found out that I could be a formidable person to deal with if you said or did anything against my babies. I also have learned that I have the strength of the spirit when I need to have it. I dealt with what Brandon's seizures, and all of the other things that went along with the lissencephaly gave our family. Who had time to cry about it? I had to deal with it for my baby boy, and that's exactly what I did. I was also totally devastated when he died in my arms. Something that will haunt me until the day I die. But I also learned how strong my spirit is; as I endured all of the pain and anguish that went along with grieving for your child, and I survived it. I didn't fall into a heap and die -- I was strong enough to live with the pain. I found other ways to get through my grief like planting an angel garden for all of the little angels that have touched my heart over the years. I've learned how very important it is that they are kept alive in our hearts and souls. I wrote poetry, and gave talks for Hospice in the attempt to help others through their pain as well. I never would've thought at 25, that my whole focus on what is important in life would change. At 25, I forged an entirely different path. I was teaching, and thought that I would never want to be a stay-at-home mom. What I found out is that mykids are more important to me than anything else in this life, and I can't think of anything more fulfilling than being home for my child and being there for her in her childhood, as my mother was for me. (I was lucky in that I had a very good teacher in my mother.) When I was 25, I thought my parents would be alive to bounce my children on their knees. Reality is that Mom died from cancer years before my children were born, and my dad only knew my daughter for a few short years. But, I am also proud in the fact that I try to instill the important things in life to my daughter that my parents instilled in me. So, even though they are not here with me in person, they will always be with me. And I am so thankful that my husband and I love each other dearly. I have seen so many friends relationships fall by the wayside. I really appreciate what a strong relationship we really have. Our love has endured more than most ordinary people have to go through. And we still are here 21 years later loving each other. So yes, life is very different at 45 than I thought it would be at 25. But, is it a bad thing? No, it is just different -- and I believe in a lot of ways I am actually a better person than I thought I would be at 25. Because instead of the superficial things that meant so much to me at 25, I realize at 45, that they are really nothing. The important things are your family, and the most important thing you can say to your husband and kids when they go to sleep at night is 'I love you'. After all, what is more important. written by Helen Miko (10/6/04)
WERE YOU REALLY THERE
By: Helen Miko 9/26/03
It seems so long ago I look at your picture and question myself Did I make you all up in my mind? Were you really there? Did I really hold you? Was it me who kissed those chubby little cheeks? Did you really nuzzle into my breasts each night? Were you really there? Did you really breathe and your heart beat? It just seems like a dream so long ago Could I really smell you? Were you really there? Was it you who had all of those seizures? Was it you who had to eat with a tube? Was it you that had to take all of that medication? Were you really there? Were you the reason we got to know all of the doctors? Were you the reason I spoke for Hospice? Were you
Here it is. I read it and was impressed with myself. lol
My Journey with Matthew is much like Homer's Epic Poem, The Odyssey. I was helping my son in English Literature and had to help him read it. At first I thought Oh my Lord, How will I ever be able to read this stuff! The more I read the better I understood it. Everyone has their own journey through life. Some are easy and some are difficult. The word "Oddyssey" comes from the greek word Odysseia. It means any significant and difficult Journey. I''m thinking of changing the name of my journal to Peekaboo Man's Odyssey. What do you think? Leave a comment and I'll make my decision after I have read all comments.
It is truly a very difficult journey. It's like you are fighting a useless battle with something you know you will never be able to beat but you keep going and keep fighting and pushing. Even though you know what the ultimate end will be. The good thing is that during the fighting and pushing you learn a lot, meet a lot of people and you come to understand what life is all about. You have a lot a happy times and sad times during the fight. You learn to lean on your faith in God more. Here's something from The Oddyssey. You may find it boring at first, but if you think of yourself as "Homer" and apply to your own life, you might get some meaning out of it. (Maybe not "every" word but this one really made sense when I thought of myself as "Homer").
Many cities did he visit, and many were the nations with whose manners and customs he was acquainted; moreover he suffered much by sea while trying to save his own life and bring his men safely home; but do what he might he could not save his men,
Good Night
If you have not visited my faces of angels link you should! Just go to the link box at the very top of this page and click on it. Here is some of what is on it.
Faces of Angels
I wanted to share some Angels, living and those who have already gotten their wings with all my friends that read the Journal. The First one I’m sharing is very special to us. When we joined the Yahoo support groups, Helen was the first member that really helped us a lot. Matthew was about 4 weeks old when we joined. She offered us lots of support and even called long distance to say hello and see how Matthew and the family were doing. Unfortunately, we didn’t get to meet Brandon face to face because he had already gotten his angel wings before we had joined the group. Helen chose to stay in the support groups and we are all glad that she did. She has given us some great advice concerning questions we have about our special children. The more I read about her son Brandon, the more I felt I had missed out on things when he was here on earth. He even favors our Matthew in a lot of his Pictures. Even though I never met him or saw him face to face, I feel like I did know him and I can see him when I look into Matthew’s face. Helen uses "Empty Arms" in her email addresses and I know somewhat of how she feels because I know that will be how I feel when Matthew gets his wings. Here are some wonderful poems she sent me to share with you and don’t forget to look at the beautiful pics!
WHEN I WAS 25 (By Helen Miko)
As I approach my 45th birthday, I think back upon what I thought my life would be like when I was 25. I can't help but to be saddened by some of the differences, and proud of others. When I was 25, I thought at 45, I would be married with 2 children-- a boy and a girl of course. Then, there was reality -- yes, I am happily married, but I've been pregnant 5 times, and only have one living child. And watching the torture my precious little boy endured is more than I ever could've imagined. But, in this same situation, I am also very proud -- proud because I have a healthy, beautiful little girl that I would die for. And also proud that I was given the chance to know my son, when no doctors thought that ever would've been the case when he was born. When I was 25, the thought never crossed my mind that I would ever have a handicapped child. After all, there was no children born with problems on either side of the family. But what I found out was what a blessing having Brandon was. He taught me more in his 4 years, than ever could've been accomplished if I never had had him. He also taught me how strong I really am when I have to be. You see, I used to be shy around a lot of people -- especially peers and the medical field. What I found is that I could be a ferocious 'Momma Bear' when I needed to be for my Brandon. I not only fought the health care and educational systems for what was right for him, but I found out that I could be a formidable person to deal with if you said or did anything against my babies. I also have learned that I have the strength of the spirit when I need to have it. I dealt with what Brandon's seizures, and all of the other things that went along with the lissencephaly gave our family. Who had time to cry about it? I had to deal with it for my baby boy, and that's exactly what I did. I was also totally devastated when he died in my arms. Something that will haunt me until the day I die. But I also learned how strong my spirit is; as I endured all of the pain and anguish that went along with grieving for your child, and I survived it. I didn't fall into a heap and die -- I was strong enough to live with the pain. I found other ways to get through my grief like planting an angel garden for all of the little angels that have touched my heart over the years. I've learned how very important it is that they are kept alive in our hearts and souls. I wrote poetry, and gave talks for Hospice in the attempt to help others through their pain as well. I never would've thought at 25, that my whole focus on what is important in life would change. At 25, I forged an entirely different path. I was teaching, and thought that I would never want to be a stay-at-home mom. What I found out is that mykids are more important to me than anything else in this life, and I can't think of anything more fulfilling than being home for my child and being there for her in her childhood, as my mother was for me. (I was lucky in that I had a very good teacher in my mother.) When I was 25, I thought my parents would be alive to bounce my children on their knees. Reality is that Mom died from cancer years before my children were born, and my dad only knew my daughter for a few short years. But, I am also proud in the fact that I try to instill the important things in life to my daughter that my parents instilled in me. So, even though they are not here with me in person, they will always be with me. And I am so thankful that my husband and I love each other dearly. I have seen so many friends relationships fall by the wayside. I really appreciate what a strong relationship we really have. Our love has endured more than most ordinary people have to go through. And we still are here 21 years later loving each other. So yes, life is very different at 45 than I thought it would be at 25. But, is it a bad thing? No, it is just different -- and I believe in a lot of ways I am actually a better person than I thought I would be at 25. Because instead of the superficial things that meant so much to me at 25, I realize at 45, that they are really nothing. The important things are your family, and the most important thing you can say to your husband and kids when they go to sleep at night is 'I love you'. After all, what is more important. written by Helen Miko (10/6/04)
WERE YOU REALLY THERE
By: Helen Miko 9/26/03
It seems so long ago I look at your picture and question myself Did I make you all up in my mind? Were you really there? Did I really hold you? Was it me who kissed those chubby little cheeks? Did you really nuzzle into my breasts each night? Were you really there? Did you really breathe and your heart beat? It just seems like a dream so long ago Could I really smell you? Were you really there? Was it you who had all of those seizures? Was it you who had to eat with a tube? Was it you that had to take all of that medication? Were you really there? Were you the reason we got to know all of the doctors? Were you the reason I spoke for Hospice? Were you
I don't even want acknowledge them but, yes he had three today. Not bad ones. They even look different. Instead of several grunts in between, he had one and he just held it for about 7 seconds. It may sound strange but I think sometimes the weather has to do with it???? Who knows??..That's ok, because if he can go one day without any, it must be a way to make them go away longer! I'll just have to keep researching!
This song you hear is one of our favorites to dance to. Matthew just lays on me and I just melt. He "fits me" like a glove. He doesn't move an inch if we are slow dancing. I added a Crabb Family song called "I sure miss you" on Ganny's Karaoke Page. Be sure to visit it before you leave. It's in memory of friends and loved ones who have passed. It's a beautiful song.
We didn't do much today. We played a little while. Matthew has a Resonance board. A thin piece of burch, two inches off the ground. My dad sanded it down really good so he could lay on it without a blanket on it. WE had a visual teacher come a few weeks ago and she told me about "the little house". You use the board for them to lay on, then you make a plex-glass top for the house. Drill holes in the plexi glass and hand different toys. (Like large gold bells, or silver tensil) Place that over him while he's on it. I thought... Matthew doesn't like to lay down and it sounds kind of silly but guess what?? It works. He can feel and hear his body movements on the board. He started moving his legs more and I put some silver measuring spoons in his hand and he would hit them on the board. Then I put him on his stomach and he held his head up and actually "tried" to roll over!
The first day he stayed on it for an HOUR. Today about an hour also. It's wierd how he likes this kind of stuff.?? Hopefull it will help.
Here's more on it.
The idea of using hollow resonating boxes or platforms to help deaf people perceive sounds as vibrations has been known for centuries (Lane, 1984). You may have seen teachers in programs for deaf students stamp their feet on wooden classroom floors to get the students’ attention. One of the leading classical musicians in the UK, Evelyn Glennie, is a percussionist who is profoundly deaf and partly “feels” the music through the wooden platforms on which she stands to perform (The Evelyn Glennie Home Page). This idea was introduced into the world of visual impairment and blindness when Lilli Nielsen began to promote the use of resonance boards by children who had visual impairments and additional difficulties (Nielsen, 1992). Then, in the later 1980s, people involved with children who are deaf-blind took up the idea, and it is now possible to find these simple but useful pieces of equipment in all kinds of programs and in homes (Johnson, Griffin-Shirley, & Koenig, 2000). Every baby and infant should have access to a resonance board as part of their collection of toys and equipment since these boards offer great and exciting opportunities.
How Do You Make a Resonance Board?
There is scope for creativity and variety in making a board, but the basic design is simple and requires only rudimentary skills in carpentry. To make a board you will need the following materials:
• A square piece of plywood at least 1/8 of an inch thick. The thickness may vary depending upon who is going to be getting on the board. Remember that if the board is too thin it will split when an adult kneels on it, and if it is too thick it will not resonate very well. I suggest that you stand in a timber shop and hold sheets of plywood of various thickness vertically on the floor, then place your ear and the side of your head against them as you tap and scratch at each one to see what you think. A good size is 4 feet square, but this can be enlarged or reduced, again depending upon who is going to be using it. Too small a square and the resonant qualities will reduce dramatically; too large a square and the center of the board will sag and touch the floor when a person’s weight is on it, seriously dampening the resonance. If the board is much bigger than 5 feet square then only tall, strong people will be able to lift and move it. I generally use 3-feet-square boards for babies and infants, and 4-feet-square boards for older children. As children with limited movement grow and get taller, I place them more diagonally on the board.
• Four strips of 1-inch-x-1-inch wood to be attached to the underside rim of the sheet of plywood (for example, on a 4-feet-square board each of these strips would need to be 3 feet 11 inches long). These can be glued around the underside rim, but if the board is likely to get a lot of use and a lot of lifting and moving around (in a school classroom rather than in a home), use glue plus nails or screws, taking care to countersink the nails or screws into the surface of the plywood for safety. Some people are concerned that using nails or screws deadens the resonant quality of the board, but I have found this to be so slight that it seems negligible.
• One can of furniture wax and a polishing cloth.
How Do You Finish and Maintain the Board?
Once the board is constructed, the upper surface and edges need to be made very smooth and safe by rubbing with sandpaper and then glasspaper. The final step is to apply two coats of furniture wax with a polishing cloth (hard work!) so that the finished surface is smooth, rather waterproof, and easy to wipe clean. You might like the idea of using scented wax polish (such as lavender) to add a consistent smell as an extra marker to identify the board. When I made my first board in 1985, I painted it black for good visual contrast and for saliva proofing. It was a beautiful job with undercoat and two coats of black gloss paint, but I found that these layers of paint deadened the resonant qualities of the board very significantly. Painting the board with clear varnish does the same, so it is best to stick to wax polish.
Maintenance needs depend upon the amount and intensity of use that the board gets. The board I used for years got a lot of use and so needed to be rubbed down with glasspaper and rewaxed two or three times every year. If you see parts of the plywood surface losing their sheen or bits of frayed wood or splinters, you urgently need to make repairs, at least to rewax with the polishing cloth until you have time to glasspaper it smooth again. To save storage space, it is best to keep the board upright against a wall (maybe behind a cupboard or a sofa), with the smooth surface towards the wall for protection.
What Can You Use on the Board?
Toys and equipment to be used on the board depend entirely upon availability, safety considerations, and personal preferences (yours and the child’s!). I recommend access to a variety of things that includes plastic and enamel plates and bowls, metal chains of various lengths and weights (such as dog choker collars), bunches of metal spoons or keys, rocking toys with bells inside (such as Chime Bird and Happy Apple), plastic or metal Slinkies, spinning tops, metal cans of all sorts, music boxes, drumsticks, large round pebbles, and vibrating and wind-up objects. Since my arrival in California from England in 2000, colleagues at the Blind Babies Foundation have introduced me to the idea of using more natural materials like pieces of smooth driftwood and piles of walnuts and pecans (still in the shell, of course!). My favorite object to use on the board is myself. I like to knock and scratch on the board or talk and sing at it as a way of making contact with the child who is on it.
How Do You Start Using the Board?
A child can be placed alone on the board or can use it with another child or with an adult in any safe, desired, or useful position. Standing and walking on the board barefoot can be fun, as well as sitting and lying down. Some children might enjoy being in their seat or standing frame on the board. For first-timers in the horizontal position the board can be a scary place in the beginning, so I often recommend spreading a towel over the board, so that it acts as a muffler to sounds and vibrations. The towel can be repositioned gradually as the child gets used to the sound and vibro-tactile qualities of the board, so that first bare feet touch the board, then the legs, then the butt, the torso and shoulders, and finally, if the child is happy and interested, you can remove the towel completely and expose the head to the bare wood. Some children may need days or weeks for this process, but others cope with it over the space of half an hour or so. Another idea is to begin with the child lying on the carpet with only his or her feet on the board. If sensitive feet are a problem you might want to reverse this position or just leave the child’s shoes or socks on. You can place the board on carpet to minimize the resonance or move it to a hard floor surface like linoleum, tiles, or concrete to produce much more dramatic feedback. Sometimes a child on a chair, or in a wheelchair, or standing might like to interact with the board held vertically next to them (as you did in the timber shop when you first selected the wood).
What Do You Do with the Board?
This is where all that hard work pays off and things get exciting! Use your imagination and the sky is the limit! You can work on an amazing range and variety of skills and activities using a board, including math, communication, large motor skills and mobility, fine motor manipulation, use of vision and hearing, tactile and visual search, turn-taking, anticipation, encouraging vocalizations and speech, problem-solving, sequencing, cause and effect, rhythm, and on and on. The special quality of the board is that any movement on its surface will produce amplified sound and matching vibration, and it will vibrate to music or voices aimed at it even if the sound-maker is not in direct contact with the wood. For children with deaf-blindness the amplified sound coming through the board might be important, but the vibration that accompanies the sounds will have an immense impact if the child is in direct contact with the board’s surface, and this might be very motivating for them. Sometimes using a board can produce very interesting and surprising outcomes:
• A distractible and very active child who moves around the room a lot may choose to remain on the board because it is the place where all the interesting feedback happens, yet a very passive immobile child may become more active on the board because of the feedback it provides, and also because it has a smooth surface that reduces friction and makes sliding, bottom-shuffling, and back-scooting easier.
• A child with poorly coordinated movements might move less but move with more care and planning in order to produce specific feedback from the board, yet a passive and inactive child might be encouraged to move more because each arm or leg movement or turn of the head produces interesting feedback when he or she knocks the rocking toy, drags the metal chains draped across wrists or ankles, or just taps and kicks on the board directly.
• A very vocal child might be silent on the board in order to listen and attend, but a normally very silent child may vocalize in response to sounds and vibrations coming through the board.
• A child who does not normally use vision may look to see what is tapping or rocking on the board or may use vision to guide arm or leg movements to produce interesting feedback again.
• A child who dislikes using his or her hands to touch things might reach out to make sounds and vibrations happen again.
• Children who do not normally interact with other people in positive ways may attend, wait, look, touch, and take turns during tapping games on the board. Interactions with peers might be encouraged if children spend time together on the board. I have also observed in regular classrooms a board raised up onto a large table with the whole class sitting around it and playing games involving turn-taking, creating or accompanying music, or banging and chanting as part of a storytelling or drama session. Used in this way the board is an effective agent for including all the children in the class activity (Park, 2000).
• By traveling around the board in some way a child might discover the board’s edges and use touch or vision to explore them, thus expanding their understanding of space and boundaries.
• A child with a poor sense of space and direction may be helped by tapping games on the board, since the vibrations through the wood will provide extra information about where the taps are coming from and where the other person is located.
• Sometimes a child might decide, or be encouraged to decide, to get himself on or off the board, and this can provide interesting challenges to problem-solving abilities.
As you can see from this list, many of the things that the board can encourage are often thought of as being in the areas of expertise of the physical therapist, the vision specialist, the orientation and mobility specialist, and the teacher of the deaf. If you have a board, any of these professionals can be brought in to explore it, to experiment with it, and to collaborate in developing ideas to help individual children. There are also other pieces of equipment designed or promoted by Lilli Nielsen (Nielsen, 1992; Johnson, Griffin-Shirley, & Koenig, 2000) that can be used with a resonance board. Above all, let the children you know show you how to use the board, and let your imaginations and creative impulses run free together. Discovering these boards almost twenty years ago changed my life in the most positive ways, and I hope the discovery changes your life too.
This song you hear is one of our favorites to dance to. Matthew just lays on me and I just melt. He "fits me" like a glove. He doesn't move an inch if we are slow dancing. I added a Crabb Family song called "I sure miss you" on Ganny's Karaoke Page. Be sure to visit it before you leave. It's in memory of friends and loved ones who have passed. It's a beautiful song.
We didn't do much today. We played a little while. Matthew has a Resonance board. A thin piece of burch, two inches off the ground. My dad sanded it down really good so he could lay on it without a blanket on it. WE had a visual teacher come a few weeks ago and she told me about "the little house". You use the board for them to lay on, then you make a plex-glass top for the house. Drill holes in the plexi glass and hand different toys. (Like large gold bells, or silver tensil) Place that over him while he's on it. I thought... Matthew doesn't like to lay down and it sounds kind of silly but guess what?? It works. He can feel and hear his body movements on the board. He started moving his legs more and I put some silver measuring spoons in his hand and he would hit them on the board. Then I put him on his stomach and he held his head up and actually "tried" to roll over!
The first day he stayed on it for an HOUR. Today about an hour also. It's wierd how he likes this kind of stuff.?? Hopefull it will help.
Here's more on it.
The idea of using hollow resonating boxes or platforms to help deaf people perceive sounds as vibrations has been known for centuries (Lane, 1984). You may have seen teachers in programs for deaf students stamp their feet on wooden classroom floors to get the students’ attention. One of the leading classical musicians in the UK, Evelyn Glennie, is a percussionist who is profoundly deaf and partly “feels” the music through the wooden platforms on which she stands to perform (The Evelyn Glennie Home Page). This idea was introduced into the world of visual impairment and blindness when Lilli Nielsen began to promote the use of resonance boards by children who had visual impairments and additional difficulties (Nielsen, 1992). Then, in the later 1980s, people involved with children who are deaf-blind took up the idea, and it is now possible to find these simple but useful pieces of equipment in all kinds of programs and in homes (Johnson, Griffin-Shirley, & Koenig, 2000). Every baby and infant should have access to a resonance board as part of their collection of toys and equipment since these boards offer great and exciting opportunities.
How Do You Make a Resonance Board?
There is scope for creativity and variety in making a board, but the basic design is simple and requires only rudimentary skills in carpentry. To make a board you will need the following materials:
• A square piece of plywood at least 1/8 of an inch thick. The thickness may vary depending upon who is going to be getting on the board. Remember that if the board is too thin it will split when an adult kneels on it, and if it is too thick it will not resonate very well. I suggest that you stand in a timber shop and hold sheets of plywood of various thickness vertically on the floor, then place your ear and the side of your head against them as you tap and scratch at each one to see what you think. A good size is 4 feet square, but this can be enlarged or reduced, again depending upon who is going to be using it. Too small a square and the resonant qualities will reduce dramatically; too large a square and the center of the board will sag and touch the floor when a person’s weight is on it, seriously dampening the resonance. If the board is much bigger than 5 feet square then only tall, strong people will be able to lift and move it. I generally use 3-feet-square boards for babies and infants, and 4-feet-square boards for older children. As children with limited movement grow and get taller, I place them more diagonally on the board.
• Four strips of 1-inch-x-1-inch wood to be attached to the underside rim of the sheet of plywood (for example, on a 4-feet-square board each of these strips would need to be 3 feet 11 inches long). These can be glued around the underside rim, but if the board is likely to get a lot of use and a lot of lifting and moving around (in a school classroom rather than in a home), use glue plus nails or screws, taking care to countersink the nails or screws into the surface of the plywood for safety. Some people are concerned that using nails or screws deadens the resonant quality of the board, but I have found this to be so slight that it seems negligible.
• One can of furniture wax and a polishing cloth.
How Do You Finish and Maintain the Board?
Once the board is constructed, the upper surface and edges need to be made very smooth and safe by rubbing with sandpaper and then glasspaper. The final step is to apply two coats of furniture wax with a polishing cloth (hard work!) so that the finished surface is smooth, rather waterproof, and easy to wipe clean. You might like the idea of using scented wax polish (such as lavender) to add a consistent smell as an extra marker to identify the board. When I made my first board in 1985, I painted it black for good visual contrast and for saliva proofing. It was a beautiful job with undercoat and two coats of black gloss paint, but I found that these layers of paint deadened the resonant qualities of the board very significantly. Painting the board with clear varnish does the same, so it is best to stick to wax polish.
Maintenance needs depend upon the amount and intensity of use that the board gets. The board I used for years got a lot of use and so needed to be rubbed down with glasspaper and rewaxed two or three times every year. If you see parts of the plywood surface losing their sheen or bits of frayed wood or splinters, you urgently need to make repairs, at least to rewax with the polishing cloth until you have time to glasspaper it smooth again. To save storage space, it is best to keep the board upright against a wall (maybe behind a cupboard or a sofa), with the smooth surface towards the wall for protection.
What Can You Use on the Board?
Toys and equipment to be used on the board depend entirely upon availability, safety considerations, and personal preferences (yours and the child’s!). I recommend access to a variety of things that includes plastic and enamel plates and bowls, metal chains of various lengths and weights (such as dog choker collars), bunches of metal spoons or keys, rocking toys with bells inside (such as Chime Bird and Happy Apple), plastic or metal Slinkies, spinning tops, metal cans of all sorts, music boxes, drumsticks, large round pebbles, and vibrating and wind-up objects. Since my arrival in California from England in 2000, colleagues at the Blind Babies Foundation have introduced me to the idea of using more natural materials like pieces of smooth driftwood and piles of walnuts and pecans (still in the shell, of course!). My favorite object to use on the board is myself. I like to knock and scratch on the board or talk and sing at it as a way of making contact with the child who is on it.
How Do You Start Using the Board?
A child can be placed alone on the board or can use it with another child or with an adult in any safe, desired, or useful position. Standing and walking on the board barefoot can be fun, as well as sitting and lying down. Some children might enjoy being in their seat or standing frame on the board. For first-timers in the horizontal position the board can be a scary place in the beginning, so I often recommend spreading a towel over the board, so that it acts as a muffler to sounds and vibrations. The towel can be repositioned gradually as the child gets used to the sound and vibro-tactile qualities of the board, so that first bare feet touch the board, then the legs, then the butt, the torso and shoulders, and finally, if the child is happy and interested, you can remove the towel completely and expose the head to the bare wood. Some children may need days or weeks for this process, but others cope with it over the space of half an hour or so. Another idea is to begin with the child lying on the carpet with only his or her feet on the board. If sensitive feet are a problem you might want to reverse this position or just leave the child’s shoes or socks on. You can place the board on carpet to minimize the resonance or move it to a hard floor surface like linoleum, tiles, or concrete to produce much more dramatic feedback. Sometimes a child on a chair, or in a wheelchair, or standing might like to interact with the board held vertically next to them (as you did in the timber shop when you first selected the wood).
What Do You Do with the Board?
This is where all that hard work pays off and things get exciting! Use your imagination and the sky is the limit! You can work on an amazing range and variety of skills and activities using a board, including math, communication, large motor skills and mobility, fine motor manipulation, use of vision and hearing, tactile and visual search, turn-taking, anticipation, encouraging vocalizations and speech, problem-solving, sequencing, cause and effect, rhythm, and on and on. The special quality of the board is that any movement on its surface will produce amplified sound and matching vibration, and it will vibrate to music or voices aimed at it even if the sound-maker is not in direct contact with the wood. For children with deaf-blindness the amplified sound coming through the board might be important, but the vibration that accompanies the sounds will have an immense impact if the child is in direct contact with the board’s surface, and this might be very motivating for them. Sometimes using a board can produce very interesting and surprising outcomes:
• A distractible and very active child who moves around the room a lot may choose to remain on the board because it is the place where all the interesting feedback happens, yet a very passive immobile child may become more active on the board because of the feedback it provides, and also because it has a smooth surface that reduces friction and makes sliding, bottom-shuffling, and back-scooting easier.
• A child with poorly coordinated movements might move less but move with more care and planning in order to produce specific feedback from the board, yet a passive and inactive child might be encouraged to move more because each arm or leg movement or turn of the head produces interesting feedback when he or she knocks the rocking toy, drags the metal chains draped across wrists or ankles, or just taps and kicks on the board directly.
• A very vocal child might be silent on the board in order to listen and attend, but a normally very silent child may vocalize in response to sounds and vibrations coming through the board.
• A child who does not normally use vision may look to see what is tapping or rocking on the board or may use vision to guide arm or leg movements to produce interesting feedback again.
• A child who dislikes using his or her hands to touch things might reach out to make sounds and vibrations happen again.
• Children who do not normally interact with other people in positive ways may attend, wait, look, touch, and take turns during tapping games on the board. Interactions with peers might be encouraged if children spend time together on the board. I have also observed in regular classrooms a board raised up onto a large table with the whole class sitting around it and playing games involving turn-taking, creating or accompanying music, or banging and chanting as part of a storytelling or drama session. Used in this way the board is an effective agent for including all the children in the class activity (Park, 2000).
• By traveling around the board in some way a child might discover the board’s edges and use touch or vision to explore them, thus expanding their understanding of space and boundaries.
• A child with a poor sense of space and direction may be helped by tapping games on the board, since the vibrations through the wood will provide extra information about where the taps are coming from and where the other person is located.
• Sometimes a child might decide, or be encouraged to decide, to get himself on or off the board, and this can provide interesting challenges to problem-solving abilities.
As you can see from this list, many of the things that the board can encourage are often thought of as being in the areas of expertise of the physical therapist, the vision specialist, the orientation and mobility specialist, and the teacher of the deaf. If you have a board, any of these professionals can be brought in to explore it, to experiment with it, and to collaborate in developing ideas to help individual children. There are also other pieces of equipment designed or promoted by Lilli Nielsen (Nielsen, 1992; Johnson, Griffin-Shirley, & Koenig, 2000) that can be used with a resonance board. Above all, let the children you know show you how to use the board, and let your imaginations and creative impulses run free together. Discovering these boards almost twenty years ago changed my life in the most positive ways, and I hope the discovery changes your life too.
MATTHEW DIDN'T HAVE ONE SINGLE SIEZURE TODAY
He also didn't take a nap today. Yesterday, every time he would start to fall asleep for a nap, he would have a siezure. He didn't act sleepy so I didn't lay him down for a nap. I held him and let him suck on his bottle to rest but he never went to sleep. I wrote down what he ate and drank yesterday and I gave him the same foods and drinks today. He didn't have hardly any foods with high carbs in them. He had two seizures yesterday. He was VERY vocal today. He would lay around and see how loud he could yell. He wasn't crying, just listening to himself yell. I realize he could still be having siezures that I cannot see (on an EEG) but we are having to live with that for now. We had to get the ones we could see under control first. It's been a very long time since Matthew went a whole day without anything that looked like a seizure. I hope this is the beginning of a new seizure free year, even though it's half way over.
He's passed out now on our bed. I'll have to let him sleep with us because I don't want to wake him up and chance him having another seizure.
Charlotte
These pics were taken after Church Sunday Morning. Casey left at about 2:15. I think the hardest part for him was giving up his cell phone to me for 13 weeks. He tried to show me how to use it but I don't think I Got it. ha.ha. I was okay and didn't cry but I'm sure I will soon. He had "some" girl call and he was telling her not to cry. She is one of his best friends all through junior high and high school. Korey called and told him bye. I was hoping he would call. You know how brothers are. They fight a lot but they do love each other. Korey looks up to Casey but he doesn't want anyone to know it. Ha.
Well I am going to take a nap with my little angel. If you can't hear the music playing it's because the web site that hast's my mp3/s is down. Wouldn't you know it.
PS: Matthew was very vocal in church today. He started laughing and making all kinds of noises. The pastor (my mom) didn't mind but we all turned to look to see if he was okay because he's never that loud! Since being off two seizure meds, he's a different little boy!
Charlotte
Josh, the one with the black t-shirt. He's leaving me tomorrow. Man, time just flew by so fast! I am so old and I am going to be so sad when he leaves!
I promised myself I would go to bed earlier than 3am. I don't know what's going on but I just can't sleep here lately!
Matthew did pretty good today regarding seizures. ONe at 3:30 am, one around 3:00pm. and a small one during nap. I still think that these seizures are going to go away totallay soon, once the meds get in his system good. He is still on a low dose of Phenylbarb so we can go up if I don't see them go away in a few weeks. HE's definately not sleepy any more so he's gotten used to the dosage.
We had a family get to gather tonight. Casey, My oldest will be leaving tomorrow at 5:30 pm for Marine Boot Camp at Paris Island South Carolina.
What do I think or feel about this? I'm happy and proud of him for chasing after his dreams and keeping a good head on his shoulders, much UNlike his mom. (me) lol.
Where did this kid come from? I still think I got the wrong one at the hospital.
I hope he does well and I can't wait for graduation. I bet he graduates top of the class! This is something he's been preparing for for several years now. He's been working out and shaping up. He's been very strict on himself. In the last two years, I've seen him go from a Knobby kneed, overweight clumsy and squeaky voiced kid to a 6'3" 195 lbs,deep voiced and handsome and muscular physiced MAN. He looks like he's already been in Marine bootcamp. I wonder what he'll look like when he gets back???
Here's a pic (a before pic) we took tonight. We'll see what this Onion Head (marine lingo) will look like when he gets broke down and built back up.
All I can say is SEMPERFI
(He asked for a tylenol yesterday for his back because he had helped the marine office move to a new location, I told him no, enjoy the pain and remember what the Marines say "Pain is only a sign of WEAKNESS leaving the body). Even though I pick on him he knows I love him and am going to miss him. This is going to be a very long 13 weeks, for him and for mama.
BEAUTIFUL BABY PAGE LINK. IF YOU HAVE A BEAUTIFUL BABY, I WANT TO POST IT ON MY NEW SITE. I WOULD ALSO LIKE YOU TO SEND A LINK FOR THEIR WEB PAGE IF YOU HAVE ONE. YOU CAN GO AHEAD AND CHECK OUT WHATS ON IT UNDER MY LINKS. MY EMAIL IS AT THE TOP OF THIS PAGE.
CHARLOTTE
I promised myself I would go to bed earlier than 3am. I don't know what's going on but I just can't sleep here lately!
Matthew did pretty good today regarding seizures. ONe at 3:30 am, one around 3:00pm. and a small one during nap. I still think that these seizures are going to go away totallay soon, once the meds get in his system good. He is still on a low dose of Phenylbarb so we can go up if I don't see them go away in a few weeks. HE's definately not sleepy any more so he's gotten used to the dosage.
We had a family get to gather tonight. Casey, My oldest will be leaving tomorrow at 5:30 pm for Marine Boot Camp at Paris Island South Carolina.
What do I think or feel about this? I'm happy and proud of him for chasing after his dreams and keeping a good head on his shoulders, much UNlike his mom. (me) lol.
Where did this kid come from? I still think I got the wrong one at the hospital.
I hope he does well and I can't wait for graduation. I bet he graduates top of the class! This is something he's been preparing for for several years now. He's been working out and shaping up. He's been very strict on himself. In the last two years, I've seen him go from a Knobby kneed, overweight clumsy and squeaky voiced kid to a 6'3" 195 lbs,deep voiced and handsome and muscular physiced MAN. He looks like he's already been in Marine bootcamp. I wonder what he'll look like when he gets back???
Here's a pic (a before pic) we took tonight. We'll see what this Onion Head (marine lingo) will look like when he gets broke down and built back up.
All I can say is SEMPERFI
(He asked for a tylenol yesterday for his back because he had helped the marine office move to a new location, I told him no, enjoy the pain and remember what the Marines say "Pain is only a sign of WEAKNESS leaving the body). Even though I pick on him he knows I love him and am going to miss him. This is going to be a very long 13 weeks, for him and for mama.
BEAUTIFUL BABY PAGE LINK. IF YOU HAVE A BEAUTIFUL BABY, I WANT TO POST IT ON MY NEW SITE. I WOULD ALSO LIKE YOU TO SEND A LINK FOR THEIR WEB PAGE IF YOU HAVE ONE. YOU CAN GO AHEAD AND CHECK OUT WHATS ON IT UNDER MY LINKS. MY EMAIL IS AT THE TOP OF THIS PAGE.
CHARLOTTE
Look What I made. My first try. I think I can do a lot better when I get some practice in. Matthew has on ONE seizure ALL DAy! Yeaaaaaaaaaaaaaaaaaaaaaaaa!
Matthew is a lot better. Only one siezure today! He started jumping and pushing in his walker again yesterday. I have not seen him this active in six months. It's great to have him back to his old self again! Click on the link in the title or go to http://www.sharkle.com/?a=video&id=1210 tp view the video.
Charlotte
Charlotte
Here's something fun to do. At least for me. I'm going to add a link about once a week with an Karaoke MP3 with the lyrics. It will be a list of our favorite songs.
The first one is Wind Beneath My Wings. Click the link to your right..Ganny's Karaoke
I want pictures too of you dancing with your angel for the website!
for the lyrics.
Charlotte
The first one is Wind Beneath My Wings. Click the link to your right..Ganny's Karaoke
I want pictures too of you dancing with your angel for the website!for the lyrics.
Charlotte
ONLY 3 SEIZURES TODAY, NONE IN THE AM AND NONE TONIGHT ONLY THREE SMALL ONES DURING A NAP TODAY, I THINK WE ARE ON A ROLL NOW....
I have tossed and turned all night. Started out with a headache. I guess I have a lot of things going through my head. Maybe if I get them on my blog they will leave me alone so I can sleep so here it goes.
First of all I am a Music Messenger for Songs of Love. We are running an ad in the Vicksburg Post soon to invite Parents of children with life threatening illnesses to our next cerebral palsy meeting. They will be able to fill out profile sheets at the meeting and get their child a CD from songs of Love. I want to see every child get there own CD. I think it is wonderful especially when most of these kids responds better to music than anything else.
Next I am going to take Matthew to Canada for ABR therapy. Yea, I have seen the tape and for some reason I think that it just might be possible. I know a couple of kind hearted people that may be willing to help us get it done. I was amazed at the case study tape. THe kids look just like Matthew physically. I was lying by him in bed a few minutes ago and was rubbing on his ribs and noticed how they really are starting to protrude. It's not because he's starving, it's because of his body structure and his muscle tone. You have to see the tape to know what I'm talking about.
Ok what else was it keeping me awake?? Oh yea, Casey is leaving in about two weeks for boot camp in South Carolina, Paris Island Marine Boot camp. I was wondering how I was gonna deal with that. I got to get my 13 letters and stamps ready for the 13 weeks he'll be gone. I was wondering about how I was going to pay the cell phone bill too but I remembered he'll be getting pd so I'll just have to talk about that to him tomorrow. ha.ha.
Ok what else.?? I was thinking of presenting this ABR therapy Idea to certain people but some people don't think it's right because I am his grandmother but who else will do it? I am his voice? If I want something for him, I sure can't wait until someone else speaks up because it won't happen if I do.
Ok what else so I can go to sleep. Oh, I want to go to the Benefit for a little girl on Saturday, I've got to call and find out the time. I want to invite them to the meeting so we can get her a CD.
OK another thing. If we get enough members at the meeting I want to start doing fundraisers for a once a year week long camp every october for the parents and the children.
Yea, then I was wondering if I need to get those plates and screws removed from Matthew hips before I take him to ABR therapy? HIs doctor said if they bother him he would remove them but how will I know? Matthew can't tell me.. I do know that he hurts in certain positions and if the plates were not there it probably wouldn't bother him as bad.
I 've got to make copies of the ABR case study tapes and send them to a few people asking for help and I've got to find someone that knows how to make copies.
Good Lord, what else??? Ok.. I think that's it.
Now I will try to sleep since I have put all my thoughts into my blog. It is out of my mind for at least 3 more hours.
PS. I gotta get Matthew's CD loaded up on that MP3 host site and use it as a background because the link sound terrible. Now Goodnight.
I have tossed and turned all night. Started out with a headache. I guess I have a lot of things going through my head. Maybe if I get them on my blog they will leave me alone so I can sleep so here it goes.
First of all I am a Music Messenger for Songs of Love. We are running an ad in the Vicksburg Post soon to invite Parents of children with life threatening illnesses to our next cerebral palsy meeting. They will be able to fill out profile sheets at the meeting and get their child a CD from songs of Love. I want to see every child get there own CD. I think it is wonderful especially when most of these kids responds better to music than anything else.
Next I am going to take Matthew to Canada for ABR therapy. Yea, I have seen the tape and for some reason I think that it just might be possible. I know a couple of kind hearted people that may be willing to help us get it done. I was amazed at the case study tape. THe kids look just like Matthew physically. I was lying by him in bed a few minutes ago and was rubbing on his ribs and noticed how they really are starting to protrude. It's not because he's starving, it's because of his body structure and his muscle tone. You have to see the tape to know what I'm talking about.
Ok what else was it keeping me awake?? Oh yea, Casey is leaving in about two weeks for boot camp in South Carolina, Paris Island Marine Boot camp. I was wondering how I was gonna deal with that. I got to get my 13 letters and stamps ready for the 13 weeks he'll be gone. I was wondering about how I was going to pay the cell phone bill too but I remembered he'll be getting pd so I'll just have to talk about that to him tomorrow. ha.ha.
Ok what else.?? I was thinking of presenting this ABR therapy Idea to certain people but some people don't think it's right because I am his grandmother but who else will do it? I am his voice? If I want something for him, I sure can't wait until someone else speaks up because it won't happen if I do.
Ok what else so I can go to sleep. Oh, I want to go to the Benefit for a little girl on Saturday, I've got to call and find out the time. I want to invite them to the meeting so we can get her a CD.
OK another thing. If we get enough members at the meeting I want to start doing fundraisers for a once a year week long camp every october for the parents and the children.
Yea, then I was wondering if I need to get those plates and screws removed from Matthew hips before I take him to ABR therapy? HIs doctor said if they bother him he would remove them but how will I know? Matthew can't tell me.. I do know that he hurts in certain positions and if the plates were not there it probably wouldn't bother him as bad.
I 've got to make copies of the ABR case study tapes and send them to a few people asking for help and I've got to find someone that knows how to make copies.
Good Lord, what else??? Ok.. I think that's it.
Now I will try to sleep since I have put all my thoughts into my blog. It is out of my mind for at least 3 more hours.
PS. I gotta get Matthew's CD loaded up on that MP3 host site and use it as a background because the link sound terrible. Now Goodnight.
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