There is a lot of time to think at 2:30am as you watch over a boy.
He is the sweetest, most stubborn boy. He seems tough. But he is not. He is fragile. He is like a glass bull in a brick factory. Charging and going full speed.
You begin to think strange things at 2:30am.
His breathing is deep and steady. His body hard at work, knitting back together.
How wonderfully we are created. It seems the way our bodies heal when we are injured would make it so that our bodies were made to live on and on. But we dont. Life is fragile. Life is a gift.
Ken and I will have been married 29 years soon. My boy will be 5 soon. Our family is a gift. Seems we lived so completely with in ourselves for so long, Ken and I. I didnt know we needed anyone else.
This boy thats sleeping so deeply next to me, well, he showed us a thing or two about love.
Who ever thought I would find spending my vacation in a childrens museum fun at my age? Or choose to buy toys instead of getting a hair cut (I know, Sandra, I know) with my allowance?
Man, when this kid smiles everything is ok.
We are going to have a couple of tough days, but we are almost on the other side. Its like the long climb up a mountian. Once you reach the top you teeter there a few moments. Then suddenly you drop and free fall. Every moment is one moment closer to healing. Every moment is better and better. Lets hold that pattern.
Its been a heck of a day at sea, sir! But on we go.
When we get home we have to rest for a few weeks. By spring we should be ready for adventure. A boy gets bored and needs to learn new things, find new fun and explore. No more hiding at home waiting for surgery. Its been a long 2 years of ups and downs. School is where you find it. He certianly deserves the world as his school.
Random thoughts early in the morning, watching over this boy.
Thursday, December 2, 2010
Done...now to move to Disney World.
The wait was hard. We met so many, another mom with a new born with Down syndrome.,, Another mom with a new born with heart defects. A spritual sister and new nurses on the floor.
Not knowing the course of the surgery was a big worry. We were told that he didnt know if this surgery would help. If it wouldnt help then he was just going to close the incision and do nothing. When they were into it an hour and a half we knew the doctor felt he could help. When the second rib to spine rod was in place, he went in to investigate the other side. Much to everyones surprise, Christian has a broken rib. It has been broken for some time because Dr O noted a cloudy mass around the break. Either the cradle of the rod attached to the rib had erroded through or he must have had a hard fall or pull on the arm. Either way, his rib was broken. Tears flowed at the thought of him being in so much pain and us not realizing what was wrong.
How could I not know? What mother does not know when her child breaks a rib? Do you know how painful that is? Did it happen the time he quit walking for three days? Or the time he cried constantly for half the day? Or maybe one of the times when he kept putting himself to bed over and over. How could I not know?
How could the doctors not know? I scan the xrays searching for a hint that the rib is broken. I am not a doctor so how could I see it if they couldnt see it? How did this happen?
We met a mom with a new born with Down syndrome. She asked how we did it. I asked "did what?" She couldnt explain so I told her. I told her that even though Ty was only a few months shy of 5, he signs, counts and reads. I told her what he could do, what happiness he brings and showed her pictures of a happy family. She cried and said she was so very glad she ran into us. We hope to maintain contact.
He is resting now, pain meds every two hours. PT starts tomorrow to get him on his feet. I dont look forward to that.
My heart is over there in that hospital bed.
All I can think of is getting him back to our little home, getting in that big recliner with him in my arms and holding him close while he heals. We are on the other side now. He made it through the dangerous part. Now the healing. It will get better and better every day.
I think I want to take him and move to Disney World.
Not knowing the course of the surgery was a big worry. We were told that he didnt know if this surgery would help. If it wouldnt help then he was just going to close the incision and do nothing. When they were into it an hour and a half we knew the doctor felt he could help. When the second rib to spine rod was in place, he went in to investigate the other side. Much to everyones surprise, Christian has a broken rib. It has been broken for some time because Dr O noted a cloudy mass around the break. Either the cradle of the rod attached to the rib had erroded through or he must have had a hard fall or pull on the arm. Either way, his rib was broken. Tears flowed at the thought of him being in so much pain and us not realizing what was wrong.
How could I not know? What mother does not know when her child breaks a rib? Do you know how painful that is? Did it happen the time he quit walking for three days? Or the time he cried constantly for half the day? Or maybe one of the times when he kept putting himself to bed over and over. How could I not know?
How could the doctors not know? I scan the xrays searching for a hint that the rib is broken. I am not a doctor so how could I see it if they couldnt see it? How did this happen?
We met a mom with a new born with Down syndrome. She asked how we did it. I asked "did what?" She couldnt explain so I told her. I told her that even though Ty was only a few months shy of 5, he signs, counts and reads. I told her what he could do, what happiness he brings and showed her pictures of a happy family. She cried and said she was so very glad she ran into us. We hope to maintain contact.
He is resting now, pain meds every two hours. PT starts tomorrow to get him on his feet. I dont look forward to that.
My heart is over there in that hospital bed.
All I can think of is getting him back to our little home, getting in that big recliner with him in my arms and holding him close while he heals. We are on the other side now. He made it through the dangerous part. Now the healing. It will get better and better every day.
I think I want to take him and move to Disney World.
The day is here...
Lots of anxiety about this one. Of course when we left the RMH he knew. He knew the hospital when we arrived. After a few tears and lots of loving and whispers he calmed. Kasey the Robot was his constant companion of choice. After getting in the room, even before the first meds were given, spontanous bursts of laughter errupted and attacks of tickles went all around the room.
We were able to keep him laughing until the first meds were given. Thankfully the needle sticks come after the "happy meds" so he smiled up until he went to sleep. Right now he is still in surgery and we wait.
Waiting...
Monday, November 29, 2010
Counting to twenty
...is so much fun if it all spills once you count it! Then you can count it again!
I don't think there is a better teaching tip for TyC than to add some slapstick comedy to the school routine~
I don't think there is a better teaching tip for TyC than to add some slapstick comedy to the school routine~
Manic Monday: Passing through memories, facing the future.
All the preparation in the world wont make me feel ready. All the emotional outbursts, the "I am going away if you won't do what I want", the echos in the empty room and the boxes and boxes of things to go through and give away cause feelings I need to hide.
Two days before Ty C and I leave.
What can I pack? No, not the new get well gift of floor puzzles. Clothes? Yes, the ones that are cut open in the back so he doesnt have to raise his arms to get into them. Velcroed on the back for easy access to a fresh wound. Not the heavier toys, the lighter ones that he can use to play laying down at first. Some of his favorite books, sure. But they wont distract while we are in pre-op. What can distract him from the anxiety of being in pre-op? Anyone have any ideas?
Three days before we sit in the pre-op room. All the thoughts of "will he walk again?" or "the scars on his back will heal and fade but how about the emotional scars of another surgery?" and the "how much more will the cold weather hurt this time?"...
We are working on the Pepsi grant for the playground. How easy it is to log on and select Butterfly Kisses...how easy to text that number in. It doesn't cost anything but a few moments. Yet all over the internet people are asking, demanding money for many things. Lives at stake, holidays made happier, lost homes found. Using every emotional ploy to get it. I have donated, I have supported yet I see few who have in turn supported this cause that costs them nothing. I asked for recipes, most people did not have time...I ask for a text, most people have no time.
My mother would have carried a message and worked hard to get that playground here. She was a staunch supporter of Ty C. I remember her holding him, teaching him to count. I remember her encouragement to adopt him, hold him close and take care of him. "Don't let him cry" she would say in a pleading voice. I stand in her room, still full of her things, the smell of her fading. Two years is a long time. Voices fade, smells fade. I call out to her and hear an echo of my own voice. But I see her. The photographs do not fade so fast. My own dreams do not fade so fast but linger in my mind.
All of her things, all of my Aunts things and all of the boxes we have to go through. One by one, selecting the few items that hold memories that are too painful to give a way. Offering then, then donating. Passing through memories. Facing the future.
Sunday, November 28, 2010
Cookbook cover...beautiful! Thank you so much!
Lucille at Poppies Blooming did this! She is quite an artist! Thank you for the cover of the cookbook "Recipes for Love"!Thoughtful Sunday
It was nice waking this morning and finding I had slept a little later. DH, who works so hard so I can stay home with lil man, had scooped him up, dispensed meds and tube fed him. Everyone was all giggles and smiles when I came in.
Last night my sweet boy read to us. Dad was delighted and loved it. It is amazing to see him try to bring the words from his brain to his mouth and say them. I see it. I see the thought process and the effort. I thank Jehovah for creation. How wonderfully we are made!
As I look to next week, knowing we only have three days left, I feel the ice cubes in my tummy. I am walking the tight rope high up in the air. I can't look. I just have to take one step at the time. One minute at the time. Time is rushing by. I wish I could stop time.
I know it is through the loving kindness of God that I have my son. I am going to trust my Heavenly Father to see us through this. I know love, that of my son's and that of my God who gave His only begotten son....Jesus. I am going to walk that rope with trust in my God.
Last night my sweet boy read to us. Dad was delighted and loved it. It is amazing to see him try to bring the words from his brain to his mouth and say them. I see it. I see the thought process and the effort. I thank Jehovah for creation. How wonderfully we are made!
As I look to next week, knowing we only have three days left, I feel the ice cubes in my tummy. I am walking the tight rope high up in the air. I can't look. I just have to take one step at the time. One minute at the time. Time is rushing by. I wish I could stop time.
I know it is through the loving kindness of God that I have my son. I am going to trust my Heavenly Father to see us through this. I know love, that of my son's and that of my God who gave His only begotten son....Jesus. I am going to walk that rope with trust in my God.
Monday, November 22, 2010
10 days...avoiding people~
therapists, nurses and repairs! oh no!If I act like I am avoiding people right now, everyone should know why. I mean I have to.
First thing this morning the nurse comes SICK to care for a little boy who isnt quite over pneumonia and has major spine surgery in 10 days. Would you say thats a poor judgement call? Or poor management? I asked her why and she said when she saw the sign on my door she called the agency. They told her to go ahead and see what I said. ????? Go ahead and what? Expose me, expose my household? Gain entry at all costs, virus, head cold what ever, and make sure we get a dose of it and let me deal with her then send her home?
In what way is this in the best interest of my child?
Our therapists have been wonderful about trying to make sure they are not sick or coming when he is sick. They have other medically involved children to care for too. They are so careful...
The repairman, who holds a part for repair waiting for his money, hasnt even come back. He called and said that he had caught a cold and remembered the sign on the front. All I could say was "thank you, thank you, thank you..."
So the nursing service is not allowed until after surgery. Until after we are past the danger point. I really thought that was what they were here for. I mean aren't they here to help us get there in a safe well manner so that the surgery can be a success and he can recover?
Since they cant behave themselves, I and my lil man will hang out here. No problem! We can entertain each other!
Friday, November 19, 2010
21 Things for this morning that have nothing to do with Ds or medical issues!
1. He says his prayers. When dad prays with him, he says AMEN!
2. He makes sure his Kasey and his stuffed animals say their prayers too!
3. My boy loves with all his heart and being!
5. He loves the piano. He is gentle and I do think he is going to play. Lessons are coming up!
6. He can beat me at memory now...either I am getting to old or he is really good! LOL!
7. He is domesticated...he helps me make the bed. Well he pulls on the cover and brings me the pillows!
8. He loves dogs. We cant wait until he has one.
9. He can play games on the computers.
10. Oh is he good at hiding things, too! Just he knows where they are. He will bring something back if you ask nicely.
11. He knows all the answers to Kasey the Kinderbot but LOVES to answer wrong so Kasey will say "do you think my circuits are crossed?"
12. He greets each day with music.
13. He makes sure all of his toys get fed. Very important to him!
14. He has a collection. He collects things that are surprising. His collection changes.
15. He has secret places to put things. He doesn't like for us to go into his secret places. Its private.
16. He adores water, balls and being outside. He has a passion for trains, trucks, cars and dinosaurs.
17. Red is absolutely his favorite color, At least right now. It used to be purple.
18. He loves the merry-go-round and wishes there was one around here.
19. He loves to stomp in water and mud puddles. Thank you Katirina for the boots. They will be useful when the rain comes in the spring!
20. He loves his 'Thomas the Train' boots!
21. When I dont feel good he comes close and rubs my arm. I feel better then.
Twenty one things about a sweet boy!
2. He makes sure his Kasey and his stuffed animals say their prayers too!
3. My boy loves with all his heart and being!
3. Artie has a lot of fun~and knows how to laugh!
4. He can read and loves it, and he surprises me every day with his choice of books!
5. He loves the piano. He is gentle and I do think he is going to play. Lessons are coming up!
6. He can beat me at memory now...either I am getting to old or he is really good! LOL!
7. He is domesticated...he helps me make the bed. Well he pulls on the cover and brings me the pillows!
8. He loves dogs. We cant wait until he has one.
9. He can play games on the computers.
10. Oh is he good at hiding things, too! Just he knows where they are. He will bring something back if you ask nicely.
11. He knows all the answers to Kasey the Kinderbot but LOVES to answer wrong so Kasey will say "do you think my circuits are crossed?"
12. He greets each day with music.
13. He makes sure all of his toys get fed. Very important to him!
14. He has a collection. He collects things that are surprising. His collection changes.
15. He has secret places to put things. He doesn't like for us to go into his secret places. Its private.
16. He adores water, balls and being outside. He has a passion for trains, trucks, cars and dinosaurs.
17. Red is absolutely his favorite color, At least right now. It used to be purple.
18. He loves the merry-go-round and wishes there was one around here.
19. He loves to stomp in water and mud puddles. Thank you Katirina for the boots. They will be useful when the rain comes in the spring!
20. He loves his 'Thomas the Train' boots!
21. When I dont feel good he comes close and rubs my arm. I feel better then.
Twenty one things about a sweet boy!
Thursday, November 18, 2010
Still counting the days. Holding you...
Hold on little boy, hold on and I will hold you through this.
I know it hurts. There is no place you can sit comfortably. Standing begins to hurt quickly now, too. Leaning forward onto a chair seat or in the net swing is where you find a few minutes of relief but that doesn't last long. Soon, little one, soon we will face the hard part.
I am thankful you don't know right now.
What do we trade for another year of your life? Another year of your laughter, discovery and delights?
I know your rib cage will ache when you breathe, your back will hurt to lay there, hurt to move and hurt when I hold you. I know it will hurt to turn your head, to cry, to lift your arm. I know...I would give everything to do this for you. I get so angry. Why do you have to go through this time and time again? How many times in your short life have you struggled to breathe? How many surgeries have you suffered? How many more times will they demand this for your life?
Your innocence makes me cry. To think that the woman who carried you carelessly and the man who gave you life walked away without looking back makes me cry. A deep wondering ache. How can it be?
But I have you now, at this moment. I have you in my arms tonight. Sleep peacefully. Rocking you just so, holding you so your back touches nothing. No pressure on your spine. The deep sleep breath so sweet. Mommy is here, mommy will hold you gently. Sleep without fear now.
I know it hurts. There is no place you can sit comfortably. Standing begins to hurt quickly now, too. Leaning forward onto a chair seat or in the net swing is where you find a few minutes of relief but that doesn't last long. Soon, little one, soon we will face the hard part.
What can I do to prepare you for this? How can I help you to steel yourself and guard your innocence? When you open those sweet eyes, will you know?
When we go up to the hospital, you will be so scared. You recongnize where you are when we go there now. Every six months is too often for it to fade from your memory.
Hopefully they wont take long and you will sleep...that deep sleep.
This time it will be harder. More invasive. When you wake it will hurt so bad for a long while. I know it will be hard to breathe. I know you will hurt worse than ever. I cant even imagine the deep searing pain of having my spine altered, having my rib cage opened, of having the intense pressure from the rods. I was told it was like getting hit by a semi truck. I know you will hurt with every move. I know you wont understand.I am thankful you don't know right now.
What do we trade for another year of your life? Another year of your laughter, discovery and delights?
I know your rib cage will ache when you breathe, your back will hurt to lay there, hurt to move and hurt when I hold you. I know it will hurt to turn your head, to cry, to lift your arm. I know...I would give everything to do this for you. I get so angry. Why do you have to go through this time and time again? How many times in your short life have you struggled to breathe? How many surgeries have you suffered? How many more times will they demand this for your life?
Your innocence makes me cry. To think that the woman who carried you carelessly and the man who gave you life walked away without looking back makes me cry. A deep wondering ache. How can it be?
But I have you now, at this moment. I have you in my arms tonight. Sleep peacefully. Rocking you just so, holding you so your back touches nothing. No pressure on your spine. The deep sleep breath so sweet. Mommy is here, mommy will hold you gently. Sleep without fear now.
Tuesday, November 16, 2010
15 days and counting...Emerging skills and a nice distraction!
A nice distraction today. A new teacher. WOW!
A wonderful sub waiting for full time work with the school said she wanted to make a difference. And today she did. My very bored 4 year old did wonderful under her direction. They worked on Pre K sight words and he is really rockin' those words! And mama learned a thing or two about teaching.
She did very well with him. He did what she asked and she let him blow his horn for a few minutes...then back to work.
I have been trying to teach him those words for a year now and just started back on the not long ago. I didnt think he got any of them. He would just sit and watch me. A one woman show going over and over sight words.
And I tried so many things...working with so many different publications and even just a chalk board but he never said them. Oh I thought he did once or twice but nobody else could understand...and he did mama proud today!
I could hear him verbalizing...speaking...saying things at her prompting. I am so amazed at how much he has progressed in the last two weeks. I can only give the credit to one of two things...its either the myomuchie or the new vitamins.
The myomuchie is a mouth peice that a doctor developed for children who grind their teeth, tongue thrust and have sensory issues...did he know my son? Its an interesting therory that seems to be working. Ty C uses it for 30 minutes twice a day. What drives a mama to buy something like that? It was not cheap.
Now at first he hated it...boy was he mad. Now he asks for it. He chews on it and plays with it and uses it proprerly...
And he is speaking much more. Tonight he said "tadpole please"...wow!
Monday, November 15, 2010
16 days and counting...Cabin Fever!
Here we are two weeks away from surgery. Hanging out in the sunshine...
Not supposed to go out among people cause so many are sick with viruses and colds.
We have cabin fever...not enough movies, school work or games to make up for adventure. I need adventure ideas for a four year old...
Wednesday, November 10, 2010
Picture Day! Wonderful Wednesday
A picture before getting dressed for pictures! LOL!
Elmo is knocking on the door of the house that Ty built!Today we are getting pictures done. Its good to have them done right before surgery. He will be five and time is flying by. After surgery we will retreat into our little healing nest and take our time recovering.
Its funny, you can never ever imagine your baby being five...and then here it is.
Now I am trying to imagine him at ten. It will be here before I know it.
Monday, November 8, 2010
Recipes
I really need some bread recipes for this cookbook! Anyone make breads?
How about an appetizer?
Consider contributing a recipe for the fundraiser cookbook! Please!
How about an appetizer?
Consider contributing a recipe for the fundraiser cookbook! Please!
Monday again?
Time is flying by. The yard sale was great. LOL I did wind up with more stuff than I started with but we will be doing it again it seems.
I am still working on the cookbook so anyone who has recipes they will share please do so!
Surgery is 24 days away. It seems like it will never come but it will be here before we are ready. I do better when I dont think about it. Today its on my mind because I had to put signs out on the front and back of the house...no entry for anyone with symptoms of cold or virus...and I put out the hand sanitizer and face masks for visitors.
Artie is having a quite a day. The dentist visit brought good news. No cavities, teeth in good shape except where he grinds. A myomuchie to help with that.
Today he will nap in the playroom on the window seat. That way I can watch and work on the cookbook.
Three weeks...its like ice cubes in my tummy...
Thursday, November 4, 2010
A good trade...
I know, I am supposed to be raising money for the therapies and for Artie to get a special needs stroller.
But I saw it sitting there. I know I keep looking at other peoples donations and now this. And its not even a donation. :(
Someone wanted to join in the yard sale and pay part of the expenses. Not donate their items, but split expenses. Thats like money in my fund right? This whole yard sale thing cost me about 35.00 so if they give 17.50 back...
Well, then they unloaded a bunch of stuff.
I saw a nearly new wheel chair sitting there. Not one for a child mind you, and adult wheel chair. Unscuffed, unused and just sitting there. I thought back about some conversations I had over heard recently. There is a someone in our congregation that needed a wheel chair at one time. Another in a nearby congregation needed to borrow a wheel chair from someone else. It has come up to many times in conversation for me to pass this up.
As I was wondering how much they were going to mark it for. I wondered if I should buy it. I mean, it was a new wheel chair in a yard sale.
Suddenly they turned around and asked me how to price something.
I used an item I had as an example. Retail price, take 75% off and if its really used, take it down further.
Seems they suddenly wanted what I used as an example for pricing. They wanted it!
Hummm....when is it direction from God? I felt this was.
I smiled brightly and said "hey, I will trade you this for the wheel chair!" The deal was done after they explained in detail how much a wheelchair costs.
I asked "how much did it cost you?" and their reply was "nothing". I figured that.
Ok. This is not raising money for the therapy. But it will help someone. Someone who needs a wheel chair. That justifies losing 25.00 for donation to the therapy fund. After all, I am in this to help others, not just myself.
It was a good evening. I think I accomplished something. I feel good about it.
I am going to let Artie give it as a gift. Its going to fulfill a need. Isnt that what I am doing?
But I saw it sitting there. I know I keep looking at other peoples donations and now this. And its not even a donation. :(
Someone wanted to join in the yard sale and pay part of the expenses. Not donate their items, but split expenses. Thats like money in my fund right? This whole yard sale thing cost me about 35.00 so if they give 17.50 back...
Well, then they unloaded a bunch of stuff.
I saw a nearly new wheel chair sitting there. Not one for a child mind you, and adult wheel chair. Unscuffed, unused and just sitting there. I thought back about some conversations I had over heard recently. There is a someone in our congregation that needed a wheel chair at one time. Another in a nearby congregation needed to borrow a wheel chair from someone else. It has come up to many times in conversation for me to pass this up.
As I was wondering how much they were going to mark it for. I wondered if I should buy it. I mean, it was a new wheel chair in a yard sale.
Suddenly they turned around and asked me how to price something.
I used an item I had as an example. Retail price, take 75% off and if its really used, take it down further.
Seems they suddenly wanted what I used as an example for pricing. They wanted it!
Hummm....when is it direction from God? I felt this was.
I smiled brightly and said "hey, I will trade you this for the wheel chair!" The deal was done after they explained in detail how much a wheelchair costs.
I asked "how much did it cost you?" and their reply was "nothing". I figured that.
Ok. This is not raising money for the therapy. But it will help someone. Someone who needs a wheel chair. That justifies losing 25.00 for donation to the therapy fund. After all, I am in this to help others, not just myself.
It was a good evening. I think I accomplished something. I feel good about it.
I am going to let Artie give it as a gift. Its going to fulfill a need. Isnt that what I am doing?
Yard sale~yeah right!
This is an experiment.
Friends have brought over lots of good junk to sell and I have quite a bit myself...and to be honest, I need to stay out of their junk.
I mean its here to sell to help start the funding for the cookbook, right? But they have such good junk!
I spent two peaceful hours going through a big box of leggos, thank you Debbie. Building things and sorting the mixed sets so "they will sell better". More time was spent(wasted) admiring old purses and some intersting coffee pots that use "pods". Oh my, and the bird cage. Did I say I wanted a bird cage? There is one out there! NO, Ann, NO!
Artie has spent the last two days recovering his forgotten toys. And finding his clothes he out grew and bringing them back to the house. He has also found some interesting things in the good junk. When he goes to bed at night, I return them to the yard sale.
My husband is helping, too. He is busy shoving my stuff from the attic out here. Did you get the "my stuff" in that last sentence? LOL...
Ok I did take his cowboy hat and boots and put out there. He wanted them back. I sold them to him for twenty dollars. Out of his allowance this month.
I guess he didnt think that was fair.
I only know one thing about tomorrow. Well several things, but it boils down to one thing. Its the coldest days of the season so far. The Big Pig Jig is this weekend. It has been raining. My helper canceled due to a personal emergency.
And if this yard sale is successful it will be because of Jehovah's blessings, not anything I do.
For those of you who are not from here and are laughing right now because you find the Big Pig Jig funny I just want you to know it seems to be as popular as the fair...something to be said about a BBQ cookoff and a big to-do about it. I have to take the Big Pig Jig as a serious threat. Ahhh the south...yard sales and the Big Pig Jig.
Friends have brought over lots of good junk to sell and I have quite a bit myself...and to be honest, I need to stay out of their junk.
I mean its here to sell to help start the funding for the cookbook, right? But they have such good junk!
I spent two peaceful hours going through a big box of leggos, thank you Debbie. Building things and sorting the mixed sets so "they will sell better". More time was spent(wasted) admiring old purses and some intersting coffee pots that use "pods". Oh my, and the bird cage. Did I say I wanted a bird cage? There is one out there! NO, Ann, NO!
Artie has spent the last two days recovering his forgotten toys. And finding his clothes he out grew and bringing them back to the house. He has also found some interesting things in the good junk. When he goes to bed at night, I return them to the yard sale.
My husband is helping, too. He is busy shoving my stuff from the attic out here. Did you get the "my stuff" in that last sentence? LOL...
Ok I did take his cowboy hat and boots and put out there. He wanted them back. I sold them to him for twenty dollars. Out of his allowance this month.
I guess he didnt think that was fair.
I only know one thing about tomorrow. Well several things, but it boils down to one thing. Its the coldest days of the season so far. The Big Pig Jig is this weekend. It has been raining. My helper canceled due to a personal emergency.
And if this yard sale is successful it will be because of Jehovah's blessings, not anything I do.
For those of you who are not from here and are laughing right now because you find the Big Pig Jig funny I just want you to know it seems to be as popular as the fair...something to be said about a BBQ cookoff and a big to-do about it. I have to take the Big Pig Jig as a serious threat. Ahhh the south...yard sales and the Big Pig Jig.
Wednesday, November 3, 2010
November...the countdown is on!
Surgery is coming up fast. In my mind I panic and look for the nearest exit.
Remaining calm and keeping up with our schedule is the best thing for lil man. Remember that self. Ok.
We went to the doctors office so confident, so sure. We went with the idea of pointing to the protruding screws that are so close to the skin and poke out so much it hurts him to lean back on anything hard. We were going to say "ok we need that fixed" and "why are the screws failing and backing out" and other questions. Questions like "when can he go to school or join in with groups of children to play?" and "when can I trust and let go and be sure he wont get hurt and not walk again?".
Scoliosis and Kyphosis. Lots of pressure in his back. OK...
This surgery will not fix the protrusions on his back. It may infact add two more screws that will stick out. The good doctor says he is ordering two peices of equipment to have on hand so that once he opens he can make the final decisions. Two. Two rods on that tray. Deep breath...hold on. Ok. Its the "lesser of two evils." as the good doctor explains.
That is ever present on my mind. Now here is what else is going on...
Well this Friday and Saturday are the yard sale days. LOL...I picked the two coldest days so far. Maybe it will work. No,thats the wrong view...If it has God's blessings it will work. So I will keep praying.
Recipes for Love
In the state of Georgia many children are in need of ABA therapy. It’s not covered by insurance so many children are either not receiving it or making do with reduced care.
“Recipes for Love” is one mom’s solution to the problem. In an effort to obtain therapy for her child and as many others as she can, this cookbook was born.
Recipes for Love is a collection of precious family recipes from those who want to reach out and help.
A longtime friend once said "nothing beats a failure but a try" so....
Can you share a recipe? That secret one? Share one in memory of someone? The name of the cookbook is "Recipes of Love".
Please send to clohen2410@yahoo.com
The yard sale buys the supplies to print the books. The book is based on the recipes provided by friends and my family. The proceeds will go to Christians therapy and any left over OR if the revenue keeps coming in I want to set up some kind of something to help provide ABA therapy to other kids...even if it is just paying for one or two sessions to help out.
Ok...back to the pile for the yard sale.
Oh but let me leave you with a visual of why I am doing this!
Remaining calm and keeping up with our schedule is the best thing for lil man. Remember that self. Ok.
We went to the doctors office so confident, so sure. We went with the idea of pointing to the protruding screws that are so close to the skin and poke out so much it hurts him to lean back on anything hard. We were going to say "ok we need that fixed" and "why are the screws failing and backing out" and other questions. Questions like "when can he go to school or join in with groups of children to play?" and "when can I trust and let go and be sure he wont get hurt and not walk again?".
Scoliosis and Kyphosis. Lots of pressure in his back. OK...
This surgery will not fix the protrusions on his back. It may infact add two more screws that will stick out. The good doctor says he is ordering two peices of equipment to have on hand so that once he opens he can make the final decisions. Two. Two rods on that tray. Deep breath...hold on. Ok. Its the "lesser of two evils." as the good doctor explains.
That is ever present on my mind. Now here is what else is going on...
Well this Friday and Saturday are the yard sale days. LOL...I picked the two coldest days so far. Maybe it will work. No,thats the wrong view...If it has God's blessings it will work. So I will keep praying.
Recipes for Love
In the state of Georgia many children are in need of ABA therapy. It’s not covered by insurance so many children are either not receiving it or making do with reduced care.
“Recipes for Love” is one mom’s solution to the problem. In an effort to obtain therapy for her child and as many others as she can, this cookbook was born.
Recipes for Love is a collection of precious family recipes from those who want to reach out and help.
A longtime friend once said "nothing beats a failure but a try" so....
Can you share a recipe? That secret one? Share one in memory of someone? The name of the cookbook is "Recipes of Love".
Please send to clohen2410@yahoo.com
The yard sale buys the supplies to print the books. The book is based on the recipes provided by friends and my family. The proceeds will go to Christians therapy and any left over OR if the revenue keeps coming in I want to set up some kind of something to help provide ABA therapy to other kids...even if it is just paying for one or two sessions to help out.
Ok...back to the pile for the yard sale.
Oh but let me leave you with a visual of why I am doing this!
Thursday, October 28, 2010
Is it Thursday already?
So much can happen in 48 hours. The speed of life can be stunning!
I had unplanned dental surgery...nothing like breaking a tooth...down the middle! And my sweet sweet Artie AKA Ty has pneumonia. That fast.
I was thinking about what another mom said and my comment to her. Over at Poppies Blooming...you can read about what she is doing.
I had unplanned dental surgery...nothing like breaking a tooth...down the middle! And my sweet sweet Artie AKA Ty has pneumonia. That fast.
I was thinking about what another mom said and my comment to her. Over at Poppies Blooming...you can read about what she is doing.
Tuesday, October 26, 2010
Time for Tuesday!
This is the day I really start working on the Cookbook. My friend who wanted to help cant. Can I do this? Yes I can!
Have I watched too much PBS? Yes I have!
I find it very theraputic calling friends and asking for a recipe. It seems to reopen the connection we have, or in some cases had. It just takes time. Time for the human touch and love. Isnt that what cooking for your family is all about? Taking the time to show that love in a world where fast food and take out is the norm?
It really reminds me of Artie. The time that otherwise busy people take to stop and speak to him. In a whirlwind of life, just taking a minute to say hi and smile.
Time for Tuesday! No nurse, no appointments and time for Tuesday.
Have I watched too much PBS? Yes I have!
I find it very theraputic calling friends and asking for a recipe. It seems to reopen the connection we have, or in some cases had. It just takes time. Time for the human touch and love. Isnt that what cooking for your family is all about? Taking the time to show that love in a world where fast food and take out is the norm?
It really reminds me of Artie. The time that otherwise busy people take to stop and speak to him. In a whirlwind of life, just taking a minute to say hi and smile.
Time for Tuesday! No nurse, no appointments and time for Tuesday.
Monday, October 25, 2010
Sunday, October 24, 2010
Funding for what insurance wont pay for....
There are just some things we cant quite get for him...insurance is not going to pay. Many have made suggestions. Soooo...we decided the least intrusive, easiest thing to do would be raise the money ourselves. Kind hearted ones insist on helping though and I thank you.
OK everyone! We are going to do the "fundraiser" yard sale for Ty Christian. Our goal is to be able to provide the therapy that insurance wont cover. We have set our goal for at least three months of therapy to give it a chance to work. Also some ladies have offered to help with a cookbook that some of our... local businesses are sponsoring and selling for him.
Many are contributing stuff to sell and I am going to sell on Ebay and Craigs List too. I will share this as we go along. I hope this can help others as well. Any money we make over our goal will go to another child with the same need in our local community.
Anyone who reads this, who wants to contribute, either by helping with the design layout or recipes are welcome. If you want to preview the yard sale...you are welcome...if you want to see the listed items, ask and I will guide you to them as I post them....
We are going to do this with Gods help~
OK everyone! We are going to do the "fundraiser" yard sale for Ty Christian. Our goal is to be able to provide the therapy that insurance wont cover. We have set our goal for at least three months of therapy to give it a chance to work. Also some ladies have offered to help with a cookbook that some of our... local businesses are sponsoring and selling for him.
Many are contributing stuff to sell and I am going to sell on Ebay and Craigs List too. I will share this as we go along. I hope this can help others as well. Any money we make over our goal will go to another child with the same need in our local community.
Anyone who reads this, who wants to contribute, either by helping with the design layout or recipes are welcome. If you want to preview the yard sale...you are welcome...if you want to see the listed items, ask and I will guide you to them as I post them....
We are going to do this with Gods help~
Home schooling...
Ty Christian is 4 1/2 with scoliosis, kyphosis and autism. We try to do the
following:
First thing we rock and talk and pray. We have to start off nice and calm. I
encourage him to work on life skills, things like brushing teeth, making our
beds together (he goes right along with me with house work even though he cant
do much right now due to surgeries and complications.)
We tend to do school work for up 20 or so minutes and then take a break.
We have a weather check, and dress our poster frog according to the weather.
That only takes a few minutes. He looks out the window and we talk about the
weather. He is non verbal but tries to sign and he makes apromimations of words
describing the weather.
Then I say the days of the week and ask him to choose what day it is. Then I
repeat "Today is ----" (what ever day it is)and encourage him to try to say it.
This only takes a few minutes too.
New on the schooling...I am going to incorporate a calendar...we are going to track dates!
Then he sits in his chair and we use any type of "draw a line" to the object for
Pre writing skills. He is not quite ready for Handwriting without Tears yet. I
use some nice ones from Kids Zone and Down Syndrome Foundation of Orange County.
There are lots in the dollar store work books. We also use sensible pencil.
I laminate these and use a dry erase or wax crayon so I can clean them and reuse
them.
We have potty time and life skills in between working.
After this he has music (and some exercise!). We have some lovely toys we got
at yard sales and goodwill. The leapfrog toys and V tech toys that have books
with pages of instruments that he can touch and hear the sound of the
instrument. I let him choose the music and we "play" marching band. I ask him
to pick one of the toy instruments (again goodwill or yard sales!) and then I
tell him which one I will play. LOL he always wants to lead! Sometimes we just
have the "sing along books" if he chooses that.
Back to the chair...
We are using a drool remediation therapy from Talk Tools. He is progressing but
the drooling has not decreased. It includes whistle blowing which we do to music
that he loves and bubble blowing. Some of the exercises he doesnt like but we
work through them. This only takes about 10 minutes at the most so we go right
on the then next item...numbers.
He just accomplished identifying the letters and numbers 1-10.
He is working on counting groups of objects 1-10. He seems to get whelmed when
it is more than 5. I count for him over 5. I am showing him how to add and
subtract up to 5. We use plastic bugs which he loves. I also draw on the wall.
I have groups of things painted on his wall, 5 turtles, 8 fish, and so on. We
practice counting the groups. I also have posters of shapes. I ask him to show
me a shape and he does.
Another break. We take some more time for life skills. Potty training,
laundry, washing up.
Then we work on words. We are just beginning sight words.
Both phonics and sounding out words and now sight words.
We use a chalk board. He loves that. I need to be more consistant in repeating
the words and building on what he knows. He is reading short sentences like "I
see a ball". Story building should be worked into this, I think.
Another break. This is around 10am so he has play time. We play with paints,
cars, books or zoo animals. I follow his lead and let him choose. He is doing
so much better with pretend play. If he wants to play alone, this is when I
also catch a minute to do bills or what ever.
At noon he naps. He doesnt hold out for a full day. I have time for house
cleaning there too.
He is up at 2 so we go back to life skills. He does not like change so we have
to be sure to stick to our routine. The therapist is working on helping us with
that.
We are using puzzles too. Some for counting, others for fine motor skills. He
loves Kasey the Kinderbot too. He likes the science module so it is so easy!
For about an hour he likes the computer...
We use Star Fall (one of his favorites!) and Time4Learning. After I guide him
on what he needs to cover on the computer I let him play with it. Star Fall
covers letters and reading and Time 4 Learning covers so much! Tools, school
supplies, shapes, numbers, playground equipment, face, animals and more. We
use his dyonvax for this. Its a touch screen. I also build some things into
the dyonvax like matching games and story lines such as "all about me" and
"consequences" in pictures. Things like "if I hit I will...If I do not hit I
will...."
We use candyland, Boggle Jr, Memory and other such games to help with turn
taking, memory exercises and learning.
We both have those days when we need a break. I use field trips to the grocery
store or walmart...nothing like counting apples!
following:
First thing we rock and talk and pray. We have to start off nice and calm. I
encourage him to work on life skills, things like brushing teeth, making our
beds together (he goes right along with me with house work even though he cant
do much right now due to surgeries and complications.)
We tend to do school work for up 20 or so minutes and then take a break.
We have a weather check, and dress our poster frog according to the weather.
That only takes a few minutes. He looks out the window and we talk about the
weather. He is non verbal but tries to sign and he makes apromimations of words
describing the weather.
Then I say the days of the week and ask him to choose what day it is. Then I
repeat "Today is ----" (what ever day it is)and encourage him to try to say it.
This only takes a few minutes too.
New on the schooling...I am going to incorporate a calendar...we are going to track dates!
Then he sits in his chair and we use any type of "draw a line" to the object for
Pre writing skills. He is not quite ready for Handwriting without Tears yet. I
use some nice ones from Kids Zone and Down Syndrome Foundation of Orange County.
There are lots in the dollar store work books. We also use sensible pencil.
I laminate these and use a dry erase or wax crayon so I can clean them and reuse
them.
We have potty time and life skills in between working.
After this he has music (and some exercise!). We have some lovely toys we got
at yard sales and goodwill. The leapfrog toys and V tech toys that have books
with pages of instruments that he can touch and hear the sound of the
instrument. I let him choose the music and we "play" marching band. I ask him
to pick one of the toy instruments (again goodwill or yard sales!) and then I
tell him which one I will play. LOL he always wants to lead! Sometimes we just
have the "sing along books" if he chooses that.
Back to the chair...
We are using a drool remediation therapy from Talk Tools. He is progressing but
the drooling has not decreased. It includes whistle blowing which we do to music
that he loves and bubble blowing. Some of the exercises he doesnt like but we
work through them. This only takes about 10 minutes at the most so we go right
on the then next item...numbers.
He just accomplished identifying the letters and numbers 1-10.
He is working on counting groups of objects 1-10. He seems to get whelmed when
it is more than 5. I count for him over 5. I am showing him how to add and
subtract up to 5. We use plastic bugs which he loves. I also draw on the wall.
I have groups of things painted on his wall, 5 turtles, 8 fish, and so on. We
practice counting the groups. I also have posters of shapes. I ask him to show
me a shape and he does.
Another break. We take some more time for life skills. Potty training,
laundry, washing up.
Then we work on words. We are just beginning sight words.
Both phonics and sounding out words and now sight words.
We use a chalk board. He loves that. I need to be more consistant in repeating
the words and building on what he knows. He is reading short sentences like "I
see a ball". Story building should be worked into this, I think.
Another break. This is around 10am so he has play time. We play with paints,
cars, books or zoo animals. I follow his lead and let him choose. He is doing
so much better with pretend play. If he wants to play alone, this is when I
also catch a minute to do bills or what ever.
At noon he naps. He doesnt hold out for a full day. I have time for house
cleaning there too.
He is up at 2 so we go back to life skills. He does not like change so we have
to be sure to stick to our routine. The therapist is working on helping us with
that.
We are using puzzles too. Some for counting, others for fine motor skills. He
loves Kasey the Kinderbot too. He likes the science module so it is so easy!
For about an hour he likes the computer...
We use Star Fall (one of his favorites!) and Time4Learning. After I guide him
on what he needs to cover on the computer I let him play with it. Star Fall
covers letters and reading and Time 4 Learning covers so much! Tools, school
supplies, shapes, numbers, playground equipment, face, animals and more. We
use his dyonvax for this. Its a touch screen. I also build some things into
the dyonvax like matching games and story lines such as "all about me" and
"consequences" in pictures. Things like "if I hit I will...If I do not hit I
will...."
We use candyland, Boggle Jr, Memory and other such games to help with turn
taking, memory exercises and learning.
We both have those days when we need a break. I use field trips to the grocery
store or walmart...nothing like counting apples!
Sunday, October 3, 2010
Time flies! 31 for 21, and I am late!
Here it is October! Wow! Down syndrome awareness month and we have come so far!
Frist here are some updated pictures!
My sweet boy!
Since we talked last, Make A Wish made him a room to bring the outside in!
And he is learning and growing so fast! His home schooling is going wonderfully!
I want to share the updates on him. I promise to catch up and keep up!
Frist here are some updated pictures!
My sweet boy!
Since we talked last, Make A Wish made him a room to bring the outside in!
And he is learning and growing so fast! His home schooling is going wonderfully!
I want to share the updates on him. I promise to catch up and keep up!
Saturday, March 6, 2010
Here comes the sun
I listen to dad singing this old song in Arties room...early this morning, here comes the sun...
Good daddy, such a good daddy. Oh, thats ribbit Artie is playing with...ribbit the frog.
We were up most of the night earlier in the week. It was one crisis after the other. When Artie finally fell into a fitful sleep in dads arms. Dad put both of us to bed in the big bed.
Two hours later, when we woke up, dad had some wonderful coffee in a wonderful new?) coffee maker going.
Lets do the count down here.
Dad had gotten up and cleaned up Artie and the bed from the disconnected pump.
Dad had given Artie meds to ease his back.
Dad had washed clothes...three mini loads of mixed colors and fabrics, but who here cares?
Dad had gone to the 24 hour Wally World and bought presents.
Dad had made coffee.
As I held my hot cup of coffee in my arthritic hands I wondered why a coffe pot and what kind of present this was. You know presents say something about the giver and the thoughts of the giver regarding the one being given to...
Later my neice dropped by the house. When she saw the new coffee pot and asked about it I told her the story.
She laughed and laughed and laughed. I must have had a puzzled look on my face. All she would say is "he loves you" and laughed some more. She knows me well.
I dont function well if I dont sleep so coffee is a help. My hands are curled up with pain early in the morning so heat is a welcomed treat. A hot cup of coffee and a few minutes to wake often make a good day start right or a bad day better. It usually takes me a painful 10 minutes to get the pot going, spilling at least one or two things.
I am grumpy.
Now, every morning he makes my coffee. The pot has a timer on it.
Let me pause here. You may think "oh a timer, everyone has one of those". But no. We are conservative, we are saving, we are careful with pennies. My coffee pot is years old, second hand, from freecycle.
My womderful dutiful husband asked me to refreecycle the old coffee pot.
Wonderful daddy...
Good daddy, such a good daddy. Oh, thats ribbit Artie is playing with...ribbit the frog.
We were up most of the night earlier in the week. It was one crisis after the other. When Artie finally fell into a fitful sleep in dads arms. Dad put both of us to bed in the big bed.
Two hours later, when we woke up, dad had some wonderful coffee in a wonderful new?) coffee maker going.
Lets do the count down here.
Dad had gotten up and cleaned up Artie and the bed from the disconnected pump.
Dad had given Artie meds to ease his back.
Dad had washed clothes...three mini loads of mixed colors and fabrics, but who here cares?
Dad had gone to the 24 hour Wally World and bought presents.
Dad had made coffee.
As I held my hot cup of coffee in my arthritic hands I wondered why a coffe pot and what kind of present this was. You know presents say something about the giver and the thoughts of the giver regarding the one being given to...
Later my neice dropped by the house. When she saw the new coffee pot and asked about it I told her the story.
She laughed and laughed and laughed. I must have had a puzzled look on my face. All she would say is "he loves you" and laughed some more. She knows me well.
I dont function well if I dont sleep so coffee is a help. My hands are curled up with pain early in the morning so heat is a welcomed treat. A hot cup of coffee and a few minutes to wake often make a good day start right or a bad day better. It usually takes me a painful 10 minutes to get the pot going, spilling at least one or two things.
I am grumpy.
Now, every morning he makes my coffee. The pot has a timer on it.
Let me pause here. You may think "oh a timer, everyone has one of those". But no. We are conservative, we are saving, we are careful with pennies. My coffee pot is years old, second hand, from freecycle.
My womderful dutiful husband asked me to refreecycle the old coffee pot.
Wonderful daddy...
Wednesday, March 3, 2010
On our way!! Sitting is beautiful!
So many wonderful people have reached out to Ty and he is doing so well. He is not standing or walking yet but he is reaching and pulling and turning... 
And last night Mr Ty sat on his own for three whole minutes! We were delighted! 
our before....
our after
And last night Mr Ty sat on his own for three whole minutes! We were delighted! 
our before....
our after
Wednesday, February 24, 2010
Surgery past
Its done. I take small comfort in that. I confess I am angry about the whole thing. He does not deserve this, and he does not deserve to keep going through it over and over.
Now its time for healing and getting back on his feet.
He was precious through out it all. Afterwards when he woke he was still, looking around at strangers, until he saw me and then he started crying. I couldnt pick him up but I took his leg and stroked his forehead. He calmed. He is such a sweet pea.
Turning him is not easy. It seems to hurt when they lift his arm.
But right now he is snoring and I am sitting here, waiting for him to need me.
There are lots of battles and lots of fun to be had. Today was a success and I am thankful.
Oh, and Aunt Sandra? Horton is watching over him waiting for him to wake up too.
Now its time for healing and getting back on his feet.
He was precious through out it all. Afterwards when he woke he was still, looking around at strangers, until he saw me and then he started crying. I couldnt pick him up but I took his leg and stroked his forehead. He calmed. He is such a sweet pea.
Turning him is not easy. It seems to hurt when they lift his arm.
But right now he is snoring and I am sitting here, waiting for him to need me.
There are lots of battles and lots of fun to be had. Today was a success and I am thankful.
Oh, and Aunt Sandra? Horton is watching over him waiting for him to wake up too.
Monday, February 22, 2010
Room booked!
We have our room booked at the RMH and we are going to try this again!
He is as ready as he will ever be. Lungs clear, healthy as can be and active.
Lets go! Wednesday it is.
He is as ready as he will ever be. Lungs clear, healthy as can be and active.
Lets go! Wednesday it is.
Thursday, February 18, 2010
Play it again Sam
What a ride!
In traffic at a stand still for over 1 1/2 hrs...Late getting there but we went on. We got all the way to the hospital, made it to pre op, vitals taken! Little man helped the nurse...
And he and dad rested and played while waiting...
Out came the markers and doc signed his back (they do that now before surgery...very reassuring, LOL).
...and a few minutes before the first stage of sedation the doc calls off the surgery!
Hardware is missing! The screws! Rescheduled for next week and anxiety is killing me!
In traffic at a stand still for over 1 1/2 hrs...Late getting there but we went on. We got all the way to the hospital, made it to pre op, vitals taken! Little man helped the nurse...
And he and dad rested and played while waiting...
Out came the markers and doc signed his back (they do that now before surgery...very reassuring, LOL).
...and a few minutes before the first stage of sedation the doc calls off the surgery!
Hardware is missing! The screws! Rescheduled for next week and anxiety is killing me!
All packed!
And off to Atlanta!
We are as ready as we will ever be!
Which way to the border? Mexico is looking good...
We are as ready as we will ever be!
Which way to the border? Mexico is looking good...
Wednesday, February 17, 2010
Back to the hospital
Tomorrow is another surgery. I keep saying 'if it were just only Down syndrome'.
I can tell his lung capacity is diminished and he is giving in to the curve. When he sleeps on his back he is kind of in a semi circle.
Little man has been through it. Here is his back since the bottom portion of the rod was removed...lot of scars there but the bright red one is the most recent.
Again they will go into the same incision and replace the rod, attaching to the remaining hardware mid spine and attaching it by screw to the lower back bone.
The doctor says that he hopes to regain 30 degrees. We will work on balance again.
Then in July the same surgery will be done to the other side. Another rod. Attached to two ribs and running down to his pelvic bone.
This makes me angry, sad, ache inside. It makes me sick.
Excuse me while I dont deal with this gracefully. Where is his childhood? Where is the time for him to run and play and grow? I cant fix this.
All I can do is make him laugh every chance I get. All I can do is make him smile at toys, games and all the things to see the world offers.
It really scares me to think his skills could regress becasue of surgery...but we will work on it. We will keep finding his smile.
I can tell his lung capacity is diminished and he is giving in to the curve. When he sleeps on his back he is kind of in a semi circle.
Little man has been through it. Here is his back since the bottom portion of the rod was removed...lot of scars there but the bright red one is the most recent.
Again they will go into the same incision and replace the rod, attaching to the remaining hardware mid spine and attaching it by screw to the lower back bone.
The doctor says that he hopes to regain 30 degrees. We will work on balance again.
Then in July the same surgery will be done to the other side. Another rod. Attached to two ribs and running down to his pelvic bone.
This makes me angry, sad, ache inside. It makes me sick.
Excuse me while I dont deal with this gracefully. Where is his childhood? Where is the time for him to run and play and grow? I cant fix this.
All I can do is make him laugh every chance I get. All I can do is make him smile at toys, games and all the things to see the world offers.
It really scares me to think his skills could regress becasue of surgery...but we will work on it. We will keep finding his smile.
Monday, February 1, 2010
Changing, changing, changing
This child is growing up before my eyes! He starts signing sometimes and either I can't keep up or he's making it up as he goes...but he is trying to communicate!
The teacher came today with the ST from the school and shared the ***good news!*** that his communication device was approved and that he is getting a 32 slot device, brand unknown, by next Monday we hope. WOWSERS! That is awesome...I think.
As she was standing there he walked by close behind his teacher signing for the red ball. She saw it and asked what he was saying...she didnt see the ball in his teachers hand. I love that. That he is signing to his teacher. Not that she knows signing but hey, he is signing to her anyway which is more than he has done before. Before it has always been just us at home and mostly me. Well you know those looks you get when it comes up....
I say "Hey Ty signed 'I want the dinosaurs please' today." And _______ (you fill in the slot, friend, teacher, doctor, neighbor) looks at me in sober unemotional silence as if to say 'oh, sure'. It's like they dont want to tell me it didnt happen.
Have you ever felt like you need a witness?
He is growing and happy. Changes are good.
The teacher came today with the ST from the school and shared the ***good news!*** that his communication device was approved and that he is getting a 32 slot device, brand unknown, by next Monday we hope. WOWSERS! That is awesome...I think.
As she was standing there he walked by close behind his teacher signing for the red ball. She saw it and asked what he was saying...she didnt see the ball in his teachers hand. I love that. That he is signing to his teacher. Not that she knows signing but hey, he is signing to her anyway which is more than he has done before. Before it has always been just us at home and mostly me. Well you know those looks you get when it comes up....
I say "Hey Ty signed 'I want the dinosaurs please' today." And _______ (you fill in the slot, friend, teacher, doctor, neighbor) looks at me in sober unemotional silence as if to say 'oh, sure'. It's like they dont want to tell me it didnt happen.
Have you ever felt like you need a witness?
He is growing and happy. Changes are good.
Sunday, January 31, 2010
Just a thought here
Those blurbs that end with 'everyone make this your status for 24 hours" seem to bug me but my sister, what a sweet heart, posted this on her facebook...
My wish for 2010 is that people will understand that children with disabilities do not have a disease; children with disabilities are not looking for a cure but ACCEPTANCE........93% of people won't copy and paste this, WILL YOU be one of the 7% that does and make this your status for at least an hour..
And then posted this in response to someone else...
I understand the occasional "your retarded" comment...but, being the aunt of a beautiful, amazing, loving downs syndrome child, I find the hard core "retard" comments offensive. So, if you think that finding humor in anothers disability that entertaining, please delete me as a facebook friend....cause I have already deleted you.
Hummm an advocate in the making!
My wish for 2010 is that people will understand that children with disabilities do not have a disease; children with disabilities are not looking for a cure but ACCEPTANCE........93% of people won't copy and paste this, WILL YOU be one of the 7% that does and make this your status for at least an hour..
And then posted this in response to someone else...
I understand the occasional "your retarded" comment...but, being the aunt of a beautiful, amazing, loving downs syndrome child, I find the hard core "retard" comments offensive. So, if you think that finding humor in anothers disability that entertaining, please delete me as a facebook friend....cause I have already deleted you.
Hummm an advocate in the making!
Friday, January 29, 2010
IEP...lets talk about them
You know, if I were driving a car without insurance and an authority stopped me, would I be innocent and allowed to blow off my responsibility if I said "we are out of money"? No, its not legal.
However, my child needs PT,OT, adaptive seating and a communication device BECAUSE the school employees do not sign. The reply? The school system does not have a PT or OT to send out to homebound children. No money! And lets not hurry into the communication device...thats not the best choice for him. And signing is not either? Oh right, thats just a problem because none of the teachers dont use ASL. And the adaptive seating to give him trunk support and perhaps maybe the ability to sit and attend for longer periods of time? Their eyes glazed over...
Yet it is against the law for them NOT to provide these things that he needs. But it is ok, right?
However, my child needs PT,OT, adaptive seating and a communication device BECAUSE the school employees do not sign. The reply? The school system does not have a PT or OT to send out to homebound children. No money! And lets not hurry into the communication device...thats not the best choice for him. And signing is not either? Oh right, thats just a problem because none of the teachers dont use ASL. And the adaptive seating to give him trunk support and perhaps maybe the ability to sit and attend for longer periods of time? Their eyes glazed over...
Yet it is against the law for them NOT to provide these things that he needs. But it is ok, right?
Long time in Limbo!
Here we are, on the edge. Waiting for surgery. Somehow I though that "there" would take longer to get "here". Suddenly it is now. This month. His implant will be reconstructed and soon we will know how far up the infection has traveled. After over five months of antibiotics...
He is not worried...I dont let him see my anxiety...
He is not worried...I dont let him see my anxiety...
Subscribe to:
Posts (Atom)
