The holidays I am not very fond of. Multiple reasons why, but we won't get into that. BUT I think I got the best holiday gift I've gotten in a long long time. It was so unexpected, and I don't even think that the person who gave it to me realized.
But in the past couple of days, I keep looking at it. Re-reading it.
When I first got it, I read it and was teary when I was done.
And when I read it days later, I still get weepy.
Here is just a small, little tid-bit of the email I received from Daniel's speech/augmentative therapist. What she writes in incredibly cool (in my book) but so incredibly nice because she didn't need to write anything at all. Completely unexpected, and from the heart.
"I just had to write to say again that Daniel did so great yesterday. Some of my kids just clam up when there is a visitor from school, or they spend most of the session wondering why someone from school is here with them in therapy. Not Daniel! He only had a few perplexed looks, but continued to do his excellent job with his eye gazing, identifying concepts, using the communication device to answer questions and to play and using his yes-no cards and signals (I absolutely love how he picked up the head shaking for “no” – that to me speaks worlds about his potential because he picked that up on his own without anyone having to specifically teach that)."
It is such an awesome feeling to have someone else see Daniel for WHO he is and not WHAT his diagnosis is. She does not judge him. She works beyond what I would ever expect to help Daniel reach his highest potential, and I will be forever thankful to her for that, and for caring about my son. (some of her work here and here).
She believes in Daniel, she teaches Daniel his ways to communicate, and what a wonderful "voice" she has given him.
Thursday, December 25, 2008
Tuesday, December 23, 2008
Pint-Size Meltdown
Daniel has started this little thing we call his mini-meltdown. I haven't gotten it on the video camera yet but as soon as I do I'm going to put it on here.
Years from now, I will show people (his high school girlfriend) and it will haunt Daniel throughout his adult life! You know what I'm talking about? Those silly little embarrassing things you did as a child and you want to crawl under a rock every time it gets mentioned? Yes sirree, that is what I'm going to do.
I've also come to the realization that Daniel (and Daddy) watch too much TV. Although to come to his defense, it is somewhat educational!! Regardless whatever the show is, as soon as the credits start to run at the end of the show, Daniel starts with the mini-meltdown. The biggest boo-boo lip comes out and he starts crying inconsolably. This lasts for about 60 seconds until the next show comes on, or until Moose A. Moose starts talking about Zee and what items match or are different on the screen! Then life is good again and we can all be happy.
As Lonnie says, "Daniel, you need to realize there are commercials in life!"
Years from now, I will show people (his high school girlfriend) and it will haunt Daniel throughout his adult life! You know what I'm talking about? Those silly little embarrassing things you did as a child and you want to crawl under a rock every time it gets mentioned? Yes sirree, that is what I'm going to do.
I've also come to the realization that Daniel (and Daddy) watch too much TV. Although to come to his defense, it is somewhat educational!! Regardless whatever the show is, as soon as the credits start to run at the end of the show, Daniel starts with the mini-meltdown. The biggest boo-boo lip comes out and he starts crying inconsolably. This lasts for about 60 seconds until the next show comes on, or until Moose A. Moose starts talking about Zee and what items match or are different on the screen! Then life is good again and we can all be happy.
As Lonnie says, "Daniel, you need to realize there are commercials in life!"
Saturday, December 20, 2008
White Crap Falling From the Sky...
Never fails. When we have something planned, it always has to snow like its never going to snow again. 
Schools were closed and people getting stuck on every side street. Needless to say, the EEG got canceled and we have to reschedule.
So, Lonnie shoveled for hours. We use to think our driveway that holds 4 cars across was pretty nice. Shall we ask Lonnie what he thinks of it now?!?!
Daniel and I decided to make M & M Christmas cookies. We got a mason jar filled with the ingredients as a gift that Daniel did at Preschool. We also decided to try a Pumpkin Roll.
OK so I'm NOT Betty Crocker!
Monday, December 15, 2008
What Is A Seizure?
For people who don't know anyone or have never experienced a seizure, they are pretty scary regardless of the degree of severity. In fact, they are so scary that as an adult who has witnessed seizures in my child, I have horrible dreams about them. When its your child that has the seizures, you are in constant fear that at any moment it could all happen again. Its a fear that rears its ugly head every time there is the slightest fever, the littlest bit of teething. But what is really scary, is that they can come on without any warning signs like a fever. They just happen. They don't just happen when you're in the comfort of your own home, nope they can happen at school, social events, walking from one room to the other. They just appear, and there is nothing you can do to stop them immediately.
Daniel has high potential for seizures. His brain during the developing stage when I was pregnant didn't form the correct way. Because of the brain malformation, his potential for any type of seizures are possible. From the little ones that some people can't really notice, to the absent seizures to the big ones called Grand Mal. Generally people when they hear of someone having a seizure they think about the persons arms and legs flailing about, crying out and falling to the ground. Not all seizures are like that. Some are very subtle, its just a twitch of the eyes, or staring off and coming to, not sure what just happened, you've lost some time. Whatever type they might be classified as, they are scary to the person who is experiencing them. Most of the time doctors must perform an EEG to see the brain waves, and hopefully during the time of the test, will catch the movement you believe to be a "seizure".
Daniel's first and only type of seizure so far (knock on wood) have been Infantile Spasms (aka West Syndrome). These rank up there with the grand daddy of seizures. They cause many horrible side effects, and if not controlled can cause a child to regress to infant stages. Sometimes they lose the ability to eat, they cause the brain to be damaged beyond what you can imagine. The brain fires when its not suppose to, causing the brain not to be able to do what its mean to do which is learn.
Along with the damage the seizures are causing, add onto that the medications that you have to give to your young child to attempt to control the seizures, that can stunt the proper development. Most of the time, not just one medication does the job. Most kids are on a "cocktail" of drugs in hopes to stop the seizures from happening multiple times on a daily basis. Daniel was first put on Klonopin and Topomax, not a good mix for Daniel, he continued to have seizures. Then Vigabatrin was used and fortunate for Daniel and us, it worked. Daniel was one of the few children to be on a "mono-therapy", meaning one medication alone stopped his seizures. This worked for about a eighteen months with no seizures. Then out of nowhere they popped up again. See you're never safe. We tried upping his dose, adding on Zonegran. Nothing was working. So it was the mixture of Vigabatrin and ACTH for 6 weeks. This seemed to do the trick. Fast forward to now, and we are completely off all seizure meds. Scary? you bet!
The reason I am on this seizure topic is that we are fast approaching our Friday appointment to get another 24 hour VEEG. As much as I hate this test with Daniel getting all traumatized by being strapped down to get the electrodes placed properly and constantly watching the video monitor to look for weird brain activity, I like them because it makes me feel safe for a short period of time. It confirms that what I think are seizures, aren't really ( I hope!) Now is about the time I start to get anxiety about the upcoming appointment. What if there is seizure activity? I know we'll just have to deal with it, but it has been so nice to see Daniel un-medicated. Not on brain altering medication. And it will be a testing of drugs because Vigabatrin is used for Infantile Spasms, not the other types of seizures.
For those who don't know much about what happens during a seizure or what it is exactly, here is good little video of it. Take a couple of minutes and go through it, even if you don't know anyone with epilepsy. Just on the off chance you meet someone some day and you need to understand what is going on. Very educational.
Wish us luck on Friday, put us on your prayer lists, rub the budda belly, whatever it is you do for luck. Hope that this EEG turns out good, and there isn't any activity. That it is the same as the last one. Clean of seizures.
Daniel has high potential for seizures. His brain during the developing stage when I was pregnant didn't form the correct way. Because of the brain malformation, his potential for any type of seizures are possible. From the little ones that some people can't really notice, to the absent seizures to the big ones called Grand Mal. Generally people when they hear of someone having a seizure they think about the persons arms and legs flailing about, crying out and falling to the ground. Not all seizures are like that. Some are very subtle, its just a twitch of the eyes, or staring off and coming to, not sure what just happened, you've lost some time. Whatever type they might be classified as, they are scary to the person who is experiencing them. Most of the time doctors must perform an EEG to see the brain waves, and hopefully during the time of the test, will catch the movement you believe to be a "seizure".
Daniel's first and only type of seizure so far (knock on wood) have been Infantile Spasms (aka West Syndrome). These rank up there with the grand daddy of seizures. They cause many horrible side effects, and if not controlled can cause a child to regress to infant stages. Sometimes they lose the ability to eat, they cause the brain to be damaged beyond what you can imagine. The brain fires when its not suppose to, causing the brain not to be able to do what its mean to do which is learn.
Along with the damage the seizures are causing, add onto that the medications that you have to give to your young child to attempt to control the seizures, that can stunt the proper development. Most of the time, not just one medication does the job. Most kids are on a "cocktail" of drugs in hopes to stop the seizures from happening multiple times on a daily basis. Daniel was first put on Klonopin and Topomax, not a good mix for Daniel, he continued to have seizures. Then Vigabatrin was used and fortunate for Daniel and us, it worked. Daniel was one of the few children to be on a "mono-therapy", meaning one medication alone stopped his seizures. This worked for about a eighteen months with no seizures. Then out of nowhere they popped up again. See you're never safe. We tried upping his dose, adding on Zonegran. Nothing was working. So it was the mixture of Vigabatrin and ACTH for 6 weeks. This seemed to do the trick. Fast forward to now, and we are completely off all seizure meds. Scary? you bet!
The reason I am on this seizure topic is that we are fast approaching our Friday appointment to get another 24 hour VEEG. As much as I hate this test with Daniel getting all traumatized by being strapped down to get the electrodes placed properly and constantly watching the video monitor to look for weird brain activity, I like them because it makes me feel safe for a short period of time. It confirms that what I think are seizures, aren't really ( I hope!) Now is about the time I start to get anxiety about the upcoming appointment. What if there is seizure activity? I know we'll just have to deal with it, but it has been so nice to see Daniel un-medicated. Not on brain altering medication. And it will be a testing of drugs because Vigabatrin is used for Infantile Spasms, not the other types of seizures.
For those who don't know much about what happens during a seizure or what it is exactly, here is good little video of it. Take a couple of minutes and go through it, even if you don't know anyone with epilepsy. Just on the off chance you meet someone some day and you need to understand what is going on. Very educational.
Wish us luck on Friday, put us on your prayer lists, rub the budda belly, whatever it is you do for luck. Hope that this EEG turns out good, and there isn't any activity. That it is the same as the last one. Clean of seizures.
Sunday, December 14, 2008
This, That and What Have You
Although Daniel doesn't like Santa Claus, he likes the gifts he brings! The RO Rotary Club threw a Holiday party for the Special Needs Kids at his school. Daniel did not attend the party (fear of Santa) but got the really cool gift above. He loves sitting by himself and playing, and wouldn't look up for me to take his picture.
The photo above is of the "Merry Christmas Children's Book Swap" gift that he got from Tanner. The deal was you had to send a holiday themed book along with a few little gifts for the child to open. Daniel had a good time opening it and playing with his new stuff with his big sister. By the way the airplane stamp is awesome for Daniel to hold and do stamping. I love it. The book "Snowman at Night" was a big hit too!
Here we have Daniel with his new mastered "pouty, boo-boo-lip". Do you all feel sorry for him? This is his way attempting to get out of doing therapy, putting his toys away, or taking a nap.
Here, he lost his battle against falling asleep while watching cartoons! Believe it or not, he is sick again! I've lost track of how many times he has sneezed today! I'm not kidding, he sneezes and everyone goes running towards him with a tissue! His little eyes are all watery, he's all stuffy, and sneezy.....uugh!
Wednesday, December 10, 2008
Tuesday, December 9, 2008
LOOK and LISTEN
People working with Daniel generally learn things quickly when it comes to his communication skills and his intelligence.
If you're walking into Daniel's life and you think you've already got him pegged because you read some where that he has a brain malformation, seizures, and spastic quad cp so he isn't going to do much. Turn around and walk back out the door you just came in. Because you are now OFFICIALLY not invited to meet the coolest kid you'll ever know. You miss out on the chance to see some really awesome accomplishments. And most of all, you just plain and simple don't get the opportunity to have Daniel in your life. Goodbye.
Hopefully what you'll learn from this experience is that just because someone is labeled a certain way doesn't make them less of a person. Doesn't make you better than him. You aren't and you never will be.
Have a nice day.
- You need to WATCH Daniel. He is non-verbal. If you're not going to take the time to look at him while you are asking him something, you're not going to see his answer.
- He communicates with his eyes and his facial expression. Eye contact is a must when talking with Daniel.
- Daniel knows how to use switches and buttons to communicate. Yes he has problems moving his arms sometimes. Give him a little extra time and you will see he knows what you're asking and what his answer is, just give him the time to get his body to answer the way he wants it too. It takes many more and different muscles to get his arm to move than it does for you!
- Don't assume just because he is Spastic Quad that he is mentally challenged. He is not. Daniel has a very unique way of knowing if you are being fake. (So do his parents!) Don't TRY to pretend you care if you don't. Just stay away from him then, we don't need your bullsh*t. Don't waste his/our time. We have nothing to prove to you. You are no body that means anything to Daniel's future. We will find someone else to get us to our destination and Daniel's success.
- Daniel is very smart. I am not just saying this because I am his parent. Ask the people who have been working with him for years. Ask his doctors. Just because his body outwardly doesn't cooperate doesn't mean that his brain isn't working.
If you're walking into Daniel's life and you think you've already got him pegged because you read some where that he has a brain malformation, seizures, and spastic quad cp so he isn't going to do much. Turn around and walk back out the door you just came in. Because you are now OFFICIALLY not invited to meet the coolest kid you'll ever know. You miss out on the chance to see some really awesome accomplishments. And most of all, you just plain and simple don't get the opportunity to have Daniel in your life. Goodbye.
Hopefully what you'll learn from this experience is that just because someone is labeled a certain way doesn't make them less of a person. Doesn't make you better than him. You aren't and you never will be.
Have a nice day.
Friday, December 5, 2008
A New Find....
While Daniel is off at school for 3 hours a day, I try to fill up my time so that I keep busy and don't think about what he is doing at school. I still have a hard time with him being there, and me being home.
There is and always will be that insecurity there of "is he being taken care of" the way I would? Like I have said before I absolutely LOVE his teacher, and so does Daniel. Well Daniel went back to school today after being out since before Thanksgiving. I felt some comfort because Ms. M (his teacher) had some things for me to do today for the classroom. Well we went in and there is a sub today!! Ms. M. is out sick! UUUGH, so I am obviously not staying there to work because no one knows what I should be doing! I so wanted Daniel to go back to school when Ms. M was there because I didn't want him to be scared. And had I known she was out today I wouldn't have taken him to school! I know that is horrible, but I have some sense of security when she is there. Hopefully she feels better soon.
I do know that today when he is there he will be with both the OT and the PT, and they both seem to really like Daniel too! I know I work myself into a tizzie over nothing I am sure. But you always hear those horror stories that happen to special needs kids. And besides Daniel being a special needs kiddo, he is also non-verbal which sucks twice as much because he can't tell me if anything is going on. YET- when he gets his augmentative device and learns how to use it, he'll be able to tell me many many things and I'll know what is going on in the cute little head of his!
Anyways...back to keeping busy while he is gone. There are blogs that I check, there are medical searches, medical equipment & therapies that I look into all the time. Well today I was looking at Signing Times. If you don't know who or what "Signing Times" is then follow the link. We got hooked on these when Daniel was about 18 months old. He loves them and so do I.
Unfortunately we don't have the whole set but the ones we do have are awesome. We have
Baby Signing Times Vol. 1 and most of the first collection that we have picked up at mom to mom sales and such. We're hoping to get the next collection soon. They keep his attention and he completely understands when I do the sign what I'm saying. Daniel can't do the signs yet because of the CP in his arms/hands but I don't care. He is understanding and learning regardless. For anyone looking to buy a really cool holiday gift for kids...these would be it.
Sounds like I'm doing a commercial for them! LOL really they are very cool.
Alright I got off the subject again (kind of!), while I was there I came across a song that was written by Rachel Coleman who created the videos. She writes all the songs for the videos, but this song is kind of for grown ups, and the words really struck home. Its called "Shine" check them out! (Scroll half way down the page in the "shine" link and you can hear the song). If you'd like to see some of the other songs and lyrics follow the link. (Songs)
There is and always will be that insecurity there of "is he being taken care of" the way I would? Like I have said before I absolutely LOVE his teacher, and so does Daniel. Well Daniel went back to school today after being out since before Thanksgiving. I felt some comfort because Ms. M (his teacher) had some things for me to do today for the classroom. Well we went in and there is a sub today!! Ms. M. is out sick! UUUGH, so I am obviously not staying there to work because no one knows what I should be doing! I so wanted Daniel to go back to school when Ms. M was there because I didn't want him to be scared. And had I known she was out today I wouldn't have taken him to school! I know that is horrible, but I have some sense of security when she is there. Hopefully she feels better soon.
I do know that today when he is there he will be with both the OT and the PT, and they both seem to really like Daniel too! I know I work myself into a tizzie over nothing I am sure. But you always hear those horror stories that happen to special needs kids. And besides Daniel being a special needs kiddo, he is also non-verbal which sucks twice as much because he can't tell me if anything is going on. YET- when he gets his augmentative device and learns how to use it, he'll be able to tell me many many things and I'll know what is going on in the cute little head of his!
Anyways...back to keeping busy while he is gone. There are blogs that I check, there are medical searches, medical equipment & therapies that I look into all the time. Well today I was looking at Signing Times. If you don't know who or what "Signing Times" is then follow the link. We got hooked on these when Daniel was about 18 months old. He loves them and so do I.
Unfortunately we don't have the whole set but the ones we do have are awesome. We have
Baby Signing Times Vol. 1 and most of the first collection that we have picked up at mom to mom sales and such. We're hoping to get the next collection soon. They keep his attention and he completely understands when I do the sign what I'm saying. Daniel can't do the signs yet because of the CP in his arms/hands but I don't care. He is understanding and learning regardless. For anyone looking to buy a really cool holiday gift for kids...these would be it.
Sounds like I'm doing a commercial for them! LOL really they are very cool.
Alright I got off the subject again (kind of!), while I was there I came across a song that was written by Rachel Coleman who created the videos. She writes all the songs for the videos, but this song is kind of for grown ups, and the words really struck home. Its called "Shine" check them out! (Scroll half way down the page in the "shine" link and you can hear the song). If you'd like to see some of the other songs and lyrics follow the link. (Songs)
Sometimes I see you stuck
For such a long time
A daily nothing new
Pretend I don’t mind
With lists of things you’ll never do
Until somehow you do
And you do — you do — you shine
The days and months and years,
they run together
Is it just one day? Or is this forever?
You’ve taught me in your lifetime
More than I’d learned in mine
And you do, you do, you shine
Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
everyone will see
Shine Shine Shine Shine Shine
I’m so glad you are mine
And you’ll shine in your own time
Well, maybe I’m too close to see you clearly
Or is it now my role to simply believe?
You’re just one of those mysteries
That may never be solved in time
But you do — you do — you shine
And Sammy will do what Sammy will do when Sammy is ready to do it
And Trevor will do what Trevor will do when Trevor is ready to do it
And Lucy will do what Lucy will do when Lucy is ready to do it
And they’ll do it in their own time
Yeah, they’ll Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
And everyone will see
Shine Shine Shine Shine Shine
I’m so glad you are mine
And you’ll shine, and you shine
For such a long time
A daily nothing new
Pretend I don’t mind
With lists of things you’ll never do
Until somehow you do
And you do — you do — you shine
The days and months and years,
they run together
Is it just one day? Or is this forever?
You’ve taught me in your lifetime
More than I’d learned in mine
And you do, you do, you shine
Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
everyone will see
Shine Shine Shine Shine Shine
I’m so glad you are mine
And you’ll shine in your own time
Well, maybe I’m too close to see you clearly
Or is it now my role to simply believe?
You’re just one of those mysteries
That may never be solved in time
But you do — you do — you shine
And Sammy will do what Sammy will do when Sammy is ready to do it
And Trevor will do what Trevor will do when Trevor is ready to do it
And Lucy will do what Lucy will do when Lucy is ready to do it
And they’ll do it in their own time
Yeah, they’ll Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
And everyone will see
Shine Shine Shine Shine Shine
I’m so glad you are mine
And you’ll shine, and you shine
Hopefully I don't get in trouble for putting them on here! If you're from Signing Times, just send me an email and I'll remove! :)
How cool is that?
How cool is that?
No No!
As of the past couple of weeks, my cute little even tempered angel has begun to give his opinion. And he isn't quiet about it!
In his 3 1/2 yrs. I can count on one hand ever having to tell him "No". He wasn't very mobile so he wasn't getting into things. He doesn't hit. He's never been a biter. He didn't cry about anything. If fact if he did knock things off the table we were happy about it because he was using his arms! So we would hardly tell him "no" when we were just happy that he was doing it!
Well, now that he is using his Pony walker more as a means of transportation from one room to the other. There is no stopping him now! He use to stay where I was, now he ventures off on his own AWAY from me. He likes to take off towards the back of the house when I'm in the front room. The back room is where the ramp is, the fireplace (he cant get to it but likes to watch it),the Christmas tree, his keyboard and his power wheelchair, among many other things. Well obviously him being in the back room and me in the front room (there are 3 rooms that separate us) isn't going to fly with me, so I sneak and peek to make sure he is doing OK.
So yesterday he goes into the back room and calls me in his way, so I walk back there and he is standing at his keyboard so I turn it on. The keyboard happens to be located near the Christmas tree. After a few minutes of playing with his keyboard Daniel decided that the Christmas tree looked fun to play with. So I pulled him OUT of the tree and told him very nicely "No Daniel" and I promptly got the biggest boo-boo lip known to mankind. I walked him back over to his keyboard and I went into the kitchen. After about 5 minutes I can hear Daniel still playing the keyboard but it sounded a little odd, so I snuck back there to see what was going on.
And there was Daniel standing in his walker with one hand in the Christmas tree and one hand stretched out playing the keyboard. "Daniel, your not suppose to play with the tree" and I get a look over his shoulder and a devilish grin.
I said OK, if you're going to play in the tree you have to come into the kitchen with me. I take him by the hand and we walked into the other room. Not in there for more than two minutes and he is pulling open the drawer! Puts his hand up on the counter top trying to reach things. What I discovered rather quickly is Daniel's arms are working better and he is taller and more interested in exploring things. All this adds up to danger in the kitchen. He is tall enough to reach the top of our gas stove and the dials. NOT GOOD! Another instance of "No, no Daniel" and a massive boo-boo lip.
Another example, when its time to come out of the walker. I have to stand behind him while unstrapping. If he doesn't want to come out he throws his body back and screams, makes his body as stiff as a board. He throws a temper tantrum. He has never done this! It was quite a shocker.
He is also doing this when I tell him its time for a nap!
Where did my little angel go??? I now have Mr. Independent who does what he wants when he wants!
In his 3 1/2 yrs. I can count on one hand ever having to tell him "No". He wasn't very mobile so he wasn't getting into things. He doesn't hit. He's never been a biter. He didn't cry about anything. If fact if he did knock things off the table we were happy about it because he was using his arms! So we would hardly tell him "no" when we were just happy that he was doing it!
Well, now that he is using his Pony walker more as a means of transportation from one room to the other. There is no stopping him now! He use to stay where I was, now he ventures off on his own AWAY from me. He likes to take off towards the back of the house when I'm in the front room. The back room is where the ramp is, the fireplace (he cant get to it but likes to watch it),the Christmas tree, his keyboard and his power wheelchair, among many other things. Well obviously him being in the back room and me in the front room (there are 3 rooms that separate us) isn't going to fly with me, so I sneak and peek to make sure he is doing OK.
So yesterday he goes into the back room and calls me in his way, so I walk back there and he is standing at his keyboard so I turn it on. The keyboard happens to be located near the Christmas tree. After a few minutes of playing with his keyboard Daniel decided that the Christmas tree looked fun to play with. So I pulled him OUT of the tree and told him very nicely "No Daniel" and I promptly got the biggest boo-boo lip known to mankind. I walked him back over to his keyboard and I went into the kitchen. After about 5 minutes I can hear Daniel still playing the keyboard but it sounded a little odd, so I snuck back there to see what was going on.
And there was Daniel standing in his walker with one hand in the Christmas tree and one hand stretched out playing the keyboard. "Daniel, your not suppose to play with the tree" and I get a look over his shoulder and a devilish grin.
I said OK, if you're going to play in the tree you have to come into the kitchen with me. I take him by the hand and we walked into the other room. Not in there for more than two minutes and he is pulling open the drawer! Puts his hand up on the counter top trying to reach things. What I discovered rather quickly is Daniel's arms are working better and he is taller and more interested in exploring things. All this adds up to danger in the kitchen. He is tall enough to reach the top of our gas stove and the dials. NOT GOOD! Another instance of "No, no Daniel" and a massive boo-boo lip.
Another example, when its time to come out of the walker. I have to stand behind him while unstrapping. If he doesn't want to come out he throws his body back and screams, makes his body as stiff as a board. He throws a temper tantrum. He has never done this! It was quite a shocker.
He is also doing this when I tell him its time for a nap!
Where did my little angel go??? I now have Mr. Independent who does what he wants when he wants!
Thursday, December 4, 2008
Not so bad after all....
I decided not to let December get me down.
So we are on the fourth day of the month, and I am attempting to maintain an even keel.
So good things...not holiday related is what I'm writing about.
Lonnie is finally back to work from being sick. And the "sick couch" is now for everyone!
Daniel went to therapy yesterday with Lonnie while I was at home "illin'".
This was very nice because Lonnie got to see how well Daniel does with Ms. Linda & Ms. Carol.
We have gotten three hours of ABR in each day of the month so far,
which is quite an accomplishment if I do say so myself.
Daniel is walking ALL over the house in his Pony walker.
I believe the ABR is doing some good things. He just seems generally stronger. Before last month there was no way Daniel could walk in the rooms with carpet. Now he pushes himself up over the lip between wood flooring and carpet. Granted it isn't as smooth sailing on the carpet but it definitely gives his legs a really good workout!
My niece had her 4th child on the 1st of the month.
So we welcome a new little niece (she now has 4 girls!) She takes after me!
Now for the really cool news.
We will be getting Daniel's new manual wheelchair this month.
Nervous and anxious to get it. We will no longer in the Kimba seating system. The Kimba looks like a high tech stroller. Now he'll have a chair that people hopefully won't stare at him thinking, "Why is a big kid sitting in a baby stroller?". Don't get me wrong I LOVE our Kimba, we just need to make it better for Daniel, and because he is growing up so quickly....
This chair is very cool. And when we were looking for a chair we were looking for something that when he is in it, people see Daniel first and not the chair. The chair is very lightweight (titanium) so it is very easy for him to propel. We will be working on him learning to propel himself. I believe it will weigh about 20 lbs total, and comparing that to the Kimba, much easier. But we have also got the handles on it for us to push him until he does learn to do it himself. This is kind of what it will look like but again with different seating, more support for his trunk and a removable headrest.
I am hoping that everything goes well and we have it by the end of the month. The chair is a Ti-Lite base but he needed just a tad bit more support than the typical seating that comes with the Ti-Lite. But that can always be switched out when he gets stronger in his core with the ABR.
The Ti-Lite is very cool because Daniel will be at the same level as his classmates. I think this is going to be good. Although I am sure we will find some things we don't like about it too. But all in all, I can't wait to get it. And as you can tell....Daniel loves it.
So we are on the fourth day of the month, and I am attempting to maintain an even keel.
So good things...not holiday related is what I'm writing about.
Lonnie is finally back to work from being sick. And the "sick couch" is now for everyone!
Daniel went to therapy yesterday with Lonnie while I was at home "illin'".
This was very nice because Lonnie got to see how well Daniel does with Ms. Linda & Ms. Carol.
We have gotten three hours of ABR in each day of the month so far,
which is quite an accomplishment if I do say so myself.
Daniel is walking ALL over the house in his Pony walker.
I believe the ABR is doing some good things. He just seems generally stronger. Before last month there was no way Daniel could walk in the rooms with carpet. Now he pushes himself up over the lip between wood flooring and carpet. Granted it isn't as smooth sailing on the carpet but it definitely gives his legs a really good workout!
My niece had her 4th child on the 1st of the month.
So we welcome a new little niece (she now has 4 girls!) She takes after me!
Now for the really cool news.
We will be getting Daniel's new manual wheelchair this month.
Nervous and anxious to get it. We will no longer in the Kimba seating system. The Kimba looks like a high tech stroller. Now he'll have a chair that people hopefully won't stare at him thinking, "Why is a big kid sitting in a baby stroller?". Don't get me wrong I LOVE our Kimba, we just need to make it better for Daniel, and because he is growing up so quickly....
This chair is very cool. And when we were looking for a chair we were looking for something that when he is in it, people see Daniel first and not the chair. The chair is very lightweight (titanium) so it is very easy for him to propel. We will be working on him learning to propel himself. I believe it will weigh about 20 lbs total, and comparing that to the Kimba, much easier. But we have also got the handles on it for us to push him until he does learn to do it himself. This is kind of what it will look like but again with different seating, more support for his trunk and a removable headrest.
I am hoping that everything goes well and we have it by the end of the month. The chair is a Ti-Lite base but he needed just a tad bit more support than the typical seating that comes with the Ti-Lite. But that can always be switched out when he gets stronger in his core with the ABR.
The Ti-Lite is very cool because Daniel will be at the same level as his classmates. I think this is going to be good. Although I am sure we will find some things we don't like about it too. But all in all, I can't wait to get it. And as you can tell....Daniel loves it.
Monday, December 1, 2008
December....UGH!
Let me start off by saying...."I HATE December"
Yes I know hate is a very strong word and not to be used lightly, so again I say "I HATE December!"
Let me explain why.
Its not that its just the most commercialized holiday month known to the frickin' world. Although that is a good one to start off with. It just sucks when all this month means is having to spend outrageous amounts of money on gifts. Gifts that people probably won't touch much after a couple of weeks! I suppose if we had lots of money my thoughts on this would be different. The stress factor just stinks too!
Its the cold and the snow. Yes the snow is beautiful when its falling, and the ground is freshly covered with all the whiteness. But try driving in it. I absolutely get a pit in the bottom of my stomach when I have to drive in snow. Yeah, I grew up in Michigan you'd think I'd be use to it. I'm not! I tend to be overly cautious and people in Michigan think they are indestructible so they drive like butt-munches!
Then its the season where parents become stupid. I think its just a given, that all parents regardless if you are the parent of a SNK or a typical child. People, if your child is sick, don't send them to school or therapy. Just because you don't want to stay home from work to watch your sick child, or your tired of hearing them whining so figure you'll send them off for someone else to take care of...NOT COOL! Also, for those that are sick....stay home, don't spread all your germs to us innocent bystanders, what did we ever do to you?!? Yes I'm bummed that Daniel has missed a week of school, along with a week of therapy sessions. But guess what? I don't think its fair to bring him when he isn't feeling well, we won't get any productive therapy out of him. Plus I have now gotten Daniel germies all over Daniel's therapist who will pass it to the other "immune suppressed" children they treat. They will also take it home themselves and pass it around their families (and miss more therapy sessions because they are sick or a family member is sick!). Now wouldn't' that be a wonderful gift to give them this holiday season? NOT!
Lonnie and Daniel are still sick. Lonnie was running a fever of 102.+ on Monday so needless to say he stayed home from work. Daniel also stayed home from school again. He still has a boogery nose and a little cough. I managed to keep Daniel away from Lonnie most of the day in case what Lonnie has isn't what Daniel had! All in all it was still a productive day and we were able to get in 3 hours of ABR! YIPEE !!
We're probably going to get kicked out of therapy for missing so much but I just don't like the idea of spreading the germs all over the place. But we are doing things at home along with the ABR, we are walking around the house chasing each other, we are doing flash cards, working on feeding (getting him interested in food again), potty time, and lots of hand work with the splints.
December also sucks because this is the time of year when my mom use to be making her holiday gifts of Christmas candy and cakes, and since she passed away a little over a year ago, its still a difficult time. Holidays just aren't the same with the family...seems that everyone is going their separate ways and stuff. It also sucks because another year is gone, another year where I look back to see the progress or regression that we've made. And wonder if all this work is doing anything at all or if we'd be at this point even if we weren't doing all the therapy??
Yes I know hate is a very strong word and not to be used lightly, so again I say "I HATE December!"
Let me explain why.
Its not that its just the most commercialized holiday month known to the frickin' world. Although that is a good one to start off with. It just sucks when all this month means is having to spend outrageous amounts of money on gifts. Gifts that people probably won't touch much after a couple of weeks! I suppose if we had lots of money my thoughts on this would be different. The stress factor just stinks too!
Its the cold and the snow. Yes the snow is beautiful when its falling, and the ground is freshly covered with all the whiteness. But try driving in it. I absolutely get a pit in the bottom of my stomach when I have to drive in snow. Yeah, I grew up in Michigan you'd think I'd be use to it. I'm not! I tend to be overly cautious and people in Michigan think they are indestructible so they drive like butt-munches!
Then its the season where parents become stupid. I think its just a given, that all parents regardless if you are the parent of a SNK or a typical child. People, if your child is sick, don't send them to school or therapy. Just because you don't want to stay home from work to watch your sick child, or your tired of hearing them whining so figure you'll send them off for someone else to take care of...NOT COOL! Also, for those that are sick....stay home, don't spread all your germs to us innocent bystanders, what did we ever do to you?!? Yes I'm bummed that Daniel has missed a week of school, along with a week of therapy sessions. But guess what? I don't think its fair to bring him when he isn't feeling well, we won't get any productive therapy out of him. Plus I have now gotten Daniel germies all over Daniel's therapist who will pass it to the other "immune suppressed" children they treat. They will also take it home themselves and pass it around their families (and miss more therapy sessions because they are sick or a family member is sick!). Now wouldn't' that be a wonderful gift to give them this holiday season? NOT!
Lonnie and Daniel are still sick. Lonnie was running a fever of 102.+ on Monday so needless to say he stayed home from work. Daniel also stayed home from school again. He still has a boogery nose and a little cough. I managed to keep Daniel away from Lonnie most of the day in case what Lonnie has isn't what Daniel had! All in all it was still a productive day and we were able to get in 3 hours of ABR! YIPEE !!
We're probably going to get kicked out of therapy for missing so much but I just don't like the idea of spreading the germs all over the place. But we are doing things at home along with the ABR, we are walking around the house chasing each other, we are doing flash cards, working on feeding (getting him interested in food again), potty time, and lots of hand work with the splints.
December also sucks because this is the time of year when my mom use to be making her holiday gifts of Christmas candy and cakes, and since she passed away a little over a year ago, its still a difficult time. Holidays just aren't the same with the family...seems that everyone is going their separate ways and stuff. It also sucks because another year is gone, another year where I look back to see the progress or regression that we've made. And wonder if all this work is doing anything at all or if we'd be at this point even if we weren't doing all the therapy??
Saturday, November 29, 2008
Not One.....But TWO!!
Daniel started getting sick last weekend. So, he missed his therapy for the week, along with school. He wasn't sleeping well because of his stuffy nose and fever. So, Lonnie and I took shifts. He seemed to be getting better on Wednesday night and we figured we were safe for Turkey Day.
Well the day after Turkey Day, Lonnie rolled over and said,
Daniel seemed to have gotten a one day reprieve on feeling crappy, but now he seems to have the runny nose and watery eyes AGAIN. Now there is a little cough along with it. Lonnie is still if the first stages of it with the runny nose, the chills, headache and slight fever. Oh its gonna be a fun filled week ahead!
So, now the two of the guys are laying on the sofa, covered in blankets and drinking orange juice like its going outta style, and a Kleenex box close at hand. Daniel is in the projectile snot flying stage with the sneezes! Makes for interesting wall art at times!!
Tuesday, November 25, 2008
A Plethora of Updates
Let's see, its been a while since I updated. So I'll try to keep it brief and give you it to you in quick little points! At least I'll try too!
Last Thursday we had our first Preschool Parent/Teacher/Therapist conference. I'll admit I was very nervous about this. But all in all, it went well. They say Daniel is adapting well with one exception- Daniel is a social butterfly. That is the kind way to put it, the other way would be to say that my child is "nosey"! I like to call him "inquisitive" He is more worried about what everyone else is doing than what he should be doing! But according to his "report card" he is on track for the year.
We will be bringing in his power wheelchair at the beginning of the year and he will be working on that. Also his Pony walker - we will bring in twice a week so that he can work with that and learn to venture OUT of the classroom and out of Ms. Mills safety zone. :) Daniel doesn't like to be away from his teacher or a certain aide that is in the room!
On Friday, Lonnie and I got to have a date night. Daniel got a wish last year from Rainbow Connection in Michigan and since then we get free tickets to different events. We have been able to attend things that normally we wouldn't be able too. Sports games, The Wiggles, and different little shows. The one Lonnie & I went to with a couple friends was "Beatlemania". Lonnie loves the Beatles so he really enjoyed the time.
Daniel is also scheduled for a 23 hr. VMR EEG(video monitoring room- EEG) in the middle of December. Which means another trip to the hospital and an overnight stay. Another 45 minutes of screaming to get all the electrodes hooked up and attached to the recorder. Then another 23 hours to sit in a hospital room with Daniel not moving off the bed because the video camera has to be able to video tape him for the whole time. Another 23 hours where no one but Daniel can sleep as we have to make sure that if he has a "weird" movement or anything suspicious that might be considered a seizure we have to mash the button to mark it on the video.
ABR - I watch the other parent's blogs of their journey through ABR, who began at the same time as Daniel (October 2008) and I always feel like well if their child is making progress why isn't mine? I know don't compare your child with others. This is easier said than done. Even with all my preaching in past blogs, that I am OK with how Daniel is and how he isn't doing certain things. And I am, but it still stings and I think it always will to see other children that are younger or the same age as Daniel and they are doing things that he can't. Its not because I'm tired of doing these things for him, its because I don't want HIM to see that he is different. Anyways, back to ABR. We are continuing to do our ABR, and I will say it is a difficult thing to get all the hours in on top of everything else Daniel has going on. As I said some parents are noticing lists of things. These are the things I have noticed with Daniel. His chest seems fuller, thicker. He is using two hands a lot more. The other night while I was laying down and Daniel was kneeling beside me with his forearms on my chest he pushed himself up to straight arms. His upper body seems to be getting slightly stronger. Now are they because of ABR or is it just happening at the same time and its purely a coincidence? This I can't tell you, but I sure as heck am not going to stop what we are doing because something seems to be working. Might be slow, but still ......this is not a sprint, this is a journey. He might not reach goals as quickly as some, but he will in Daniel time. And when he does we'll all be there to cheer him on.
Went out shopping this weekend to two stores. TWO. And both places either Lonnie or I said something to someone who was staring. I mean jeez....have you people NEVER seen a child in a wheelchair? Lonnie was probably a little more tactful than I was. Go figure right?! This lady was staring at Daniel, and there was no mistaking it. I simply looked at her and said "Yep, a little boy in a wheelchair.....pretty frickin' amazing eh?!" Lonnie was about half way down the aisle behind us and he said what's the problem? I simply said the lady was nosy and that I had to explain that it was a boy in a wheelchair, and he said "oh ok". Like its typical to have to explain.
Then Lonnie saw someone staring as we were walking down the aisle and said to her "Are there any questions I can answer for you?". Now usually he'll say this and he'll just keep walking but this time we kept eye contact with the lady until she answered him. LOL She actually kind of just looked at him like Oh crap, which way can I run?!? then she answered him by shaking her head no. Needless to say, I was done shopping at that point and just felt it better we go home cause one of us would probably harm the next person who even remotely looked our way! Now why can't most people be like the guy in the grocery store who was walking towards us, saw Daniel was looking at him and he smiled, waved to Daniel and spoke directly to Daniel "How you doing big guy" and walked on passed. He obviously was raised by someone who taught him manners!!
Potty training- We get up every morning and Daniel goes pee pee on the potty. I'm kind of just getting him use to sitting there every morning. He generally wakes up dry so I know he has to go, so we sit and read a book or count our toes until he pees. I don't know about anybody else's kid, but every time Daniel pees he does a whole body shiver so I know each and every time!! During the Christmas break at school we will be doing the actual "training" as we have no therapies for that two week period and we should be home most of the time. So starting at the beginning of December we will do our hourly diaper checks and right them down in a journal. I am very excited to attempt this as I think it will be huge for Daniel.
We have been working on our eBay store. Just another little way to keep me busy and also get a little extra money to go towards Daniel's therapy expenses. So, if you would like to take a look, or send the link on to anyone else to help our that would be greatly appreciated. Custom orders are welcome, and if there are colors or certain things you'd like but don't see on there, just send me a message and we can figure it out. I'm hoping this will help with at least part of the costs for ABR in February. The link for the store (4 x 4 fabrics and more) is on the side bar also.
Daniel's therapies continue to go well. He still does 2 x a week of OT, 2x a week of PT and 2x a week of speech/augmentative. All of this on top of his ABR and his 5x a week of preschool. Busy boy!! And I want to look into hippotherapy and more swim therapy also. Might as well dream that there are endless hours in the day right?!
We seem to have a sick little boy the past couple of days. He is running a low grade fever (but fevers suck when you're epileptic) and a bit of a runny nose. Needless to say he has missed school and therapy this week. Just wish that other parents realize that when your child is sick it is BEST FOR EVERYONE to keep them home. Don't send them to school or therapy so that they then can cough and hack and sneeze all over everything including the therapist and teacher who then will pass it to the next child! Nothing is more irritating then sitting in the lobby waiting for your turn and seeing a parent hauling in their visibly sick child for therapy. WHAT ARE YOU THINKING??!!
Last Thursday we had our first Preschool Parent/Teacher/Therapist conference. I'll admit I was very nervous about this. But all in all, it went well. They say Daniel is adapting well with one exception- Daniel is a social butterfly. That is the kind way to put it, the other way would be to say that my child is "nosey"! I like to call him "inquisitive" He is more worried about what everyone else is doing than what he should be doing! But according to his "report card" he is on track for the year.
We will be bringing in his power wheelchair at the beginning of the year and he will be working on that. Also his Pony walker - we will bring in twice a week so that he can work with that and learn to venture OUT of the classroom and out of Ms. Mills safety zone. :) Daniel doesn't like to be away from his teacher or a certain aide that is in the room!
On Friday, Lonnie and I got to have a date night. Daniel got a wish last year from Rainbow Connection in Michigan and since then we get free tickets to different events. We have been able to attend things that normally we wouldn't be able too. Sports games, The Wiggles, and different little shows. The one Lonnie & I went to with a couple friends was "Beatlemania". Lonnie loves the Beatles so he really enjoyed the time.
Daniel is also scheduled for a 23 hr. VMR EEG(video monitoring room- EEG) in the middle of December. Which means another trip to the hospital and an overnight stay. Another 45 minutes of screaming to get all the electrodes hooked up and attached to the recorder. Then another 23 hours to sit in a hospital room with Daniel not moving off the bed because the video camera has to be able to video tape him for the whole time. Another 23 hours where no one but Daniel can sleep as we have to make sure that if he has a "weird" movement or anything suspicious that might be considered a seizure we have to mash the button to mark it on the video.
ABR - I watch the other parent's blogs of their journey through ABR, who began at the same time as Daniel (October 2008) and I always feel like well if their child is making progress why isn't mine? I know don't compare your child with others. This is easier said than done. Even with all my preaching in past blogs, that I am OK with how Daniel is and how he isn't doing certain things. And I am, but it still stings and I think it always will to see other children that are younger or the same age as Daniel and they are doing things that he can't. Its not because I'm tired of doing these things for him, its because I don't want HIM to see that he is different. Anyways, back to ABR. We are continuing to do our ABR, and I will say it is a difficult thing to get all the hours in on top of everything else Daniel has going on. As I said some parents are noticing lists of things. These are the things I have noticed with Daniel. His chest seems fuller, thicker. He is using two hands a lot more. The other night while I was laying down and Daniel was kneeling beside me with his forearms on my chest he pushed himself up to straight arms. His upper body seems to be getting slightly stronger. Now are they because of ABR or is it just happening at the same time and its purely a coincidence? This I can't tell you, but I sure as heck am not going to stop what we are doing because something seems to be working. Might be slow, but still ......this is not a sprint, this is a journey. He might not reach goals as quickly as some, but he will in Daniel time. And when he does we'll all be there to cheer him on.
Went out shopping this weekend to two stores. TWO. And both places either Lonnie or I said something to someone who was staring. I mean jeez....have you people NEVER seen a child in a wheelchair? Lonnie was probably a little more tactful than I was. Go figure right?! This lady was staring at Daniel, and there was no mistaking it. I simply looked at her and said "Yep, a little boy in a wheelchair.....pretty frickin' amazing eh?!" Lonnie was about half way down the aisle behind us and he said what's the problem? I simply said the lady was nosy and that I had to explain that it was a boy in a wheelchair, and he said "oh ok". Like its typical to have to explain.
Then Lonnie saw someone staring as we were walking down the aisle and said to her "Are there any questions I can answer for you?". Now usually he'll say this and he'll just keep walking but this time we kept eye contact with the lady until she answered him. LOL She actually kind of just looked at him like Oh crap, which way can I run?!? then she answered him by shaking her head no. Needless to say, I was done shopping at that point and just felt it better we go home cause one of us would probably harm the next person who even remotely looked our way! Now why can't most people be like the guy in the grocery store who was walking towards us, saw Daniel was looking at him and he smiled, waved to Daniel and spoke directly to Daniel "How you doing big guy" and walked on passed. He obviously was raised by someone who taught him manners!!
Potty training- We get up every morning and Daniel goes pee pee on the potty. I'm kind of just getting him use to sitting there every morning. He generally wakes up dry so I know he has to go, so we sit and read a book or count our toes until he pees. I don't know about anybody else's kid, but every time Daniel pees he does a whole body shiver so I know each and every time!! During the Christmas break at school we will be doing the actual "training" as we have no therapies for that two week period and we should be home most of the time. So starting at the beginning of December we will do our hourly diaper checks and right them down in a journal. I am very excited to attempt this as I think it will be huge for Daniel.
We have been working on our eBay store. Just another little way to keep me busy and also get a little extra money to go towards Daniel's therapy expenses. So, if you would like to take a look, or send the link on to anyone else to help our that would be greatly appreciated. Custom orders are welcome, and if there are colors or certain things you'd like but don't see on there, just send me a message and we can figure it out. I'm hoping this will help with at least part of the costs for ABR in February. The link for the store (4 x 4 fabrics and more) is on the side bar also.
Daniel's therapies continue to go well. He still does 2 x a week of OT, 2x a week of PT and 2x a week of speech/augmentative. All of this on top of his ABR and his 5x a week of preschool. Busy boy!! And I want to look into hippotherapy and more swim therapy also. Might as well dream that there are endless hours in the day right?!
We seem to have a sick little boy the past couple of days. He is running a low grade fever (but fevers suck when you're epileptic) and a bit of a runny nose. Needless to say he has missed school and therapy this week. Just wish that other parents realize that when your child is sick it is BEST FOR EVERYONE to keep them home. Don't send them to school or therapy so that they then can cough and hack and sneeze all over everything including the therapist and teacher who then will pass it to the next child! Nothing is more irritating then sitting in the lobby waiting for your turn and seeing a parent hauling in their visibly sick child for therapy. WHAT ARE YOU THINKING??!!
Tuesday, November 18, 2008
Drinkin'
Ok I can't figure out how to get the video from the cell phone to my computer but I did get the photo.
Which really doesn't do the whole thing justice, but you get the point!!
Please note: the fingers grasping openingly the glass. Please note that TWO hands are on the glass. Please note that glass is headed for the mouth to take a sip!!!
No Room For the Weak or Meek...
I have discovered that the world of special needs is no place for someone who is weak, meek, quiet, passive or thin skinned.
It has taken me a few years to come to this full realization.
And I must admit, that I sometimes wonder if I can cut it in this world.
There are so many emotions that a parent/caregiver and the child goes through.
GUILT. UNDO PRESSURE. FALSE HOPE. UNREALISTIC EXPECTATIONS. JOY. EMOTIONAL ROLLER COASTER. FEAR. CLICKING OF THE CLOCK
When Daniel seems down, I am down. Vice Verse also. I have been down and dragging ALLOT lately, and I am FRICKIN' SICK of it. I wake up in the morning and lay there and say "OK today IS going to be a productive and good day." and when I go to bed at night I lay there and say "WTF? What did we do today? I didn't accomplish even a third of what was on the list to do."
I needed to realize that just because I didn't do EVERYTHING on the list of things to do with Daniel, that I was NOT a failure. That I am NOT letting Daniel down. I am simply human and I can only do so much. I get tired, I have medical issues, I get sick, I have other children and people in my life. I AM NOT SELFISH. I need time to just be a regular ol' mom. I don't always need to be in therapist, advocate, doctor,teacher, wonder mom mode. I need time to just chill, and Daniel needs time to be a typical 3 year old little boy. Every moment of everyday does NOT need to be crammed with some for of "treatment"/"training". I do not need to go to bed every night feeling like I failed my child.
When you are the parent of a SNK (special needs kid) you learn to stop caring about the scores on the tests, and not cry every time someone asks if your child has met the milestone for their age. Don't give a crap about what the other kids are doing, don't panic about the parent/teacher conference. Don't take it to heart when they say that he doesn't "compare" to other kids. Don't wear your heart on your sleeve.
Guess what people?? I don't want him to compare to the other 3 1/2 yr olds out there. Daniel is unique. He was unique from the day he was born. He was unique BEFORE he got all of the diagnosis that he has. And I wouldn't have him any other way. Daniel is a fighter, and damn it....his mom is going to be a fighter too. He may have to teach me some things along the way.
So far he has taught me to not be meek, don't be passive and let people walk all over you. He has taught me to love unconditionally. He has taught me patience (Lonnie stop rolling your eyes!)
He tells me with his eyes.... That he is truly happy. And that = happy mama
So I say:
Get Up and be proud, don't care what people say or do. If they are hurtful, smile at them (and smile because you know in your heart of hearts....that Karma will bite them in the ass one day!)
and smile because you know you truly have an amazing child. You teach your child on your terms, you do what you can for your child, and you love your child. You teach them right from wrong, and you teach them to treat others kindly and with respect no matter of their abilities, disabilities, race, or religion.
And with that being said, I am going to bed.........no I didn't get my whole list of things in with Daniel and I am NOT a failure to my child, and just because he might not measure up on someone else's scale, in the grand scheme of it, who the hell cares? When he's 35 yrs old, do you think anyone is going to say...."well he didn't walk unsupported until he was XX years old".
But I will tell you this...he held a glass today (with no handles) and took a drink!! AND today was the first day he held his own bottle and drank it by HIMSELF! YAW HOOOO!
and as soon as I can figure out how to get it off the cell phone and on here I will!
It has taken me a few years to come to this full realization.
And I must admit, that I sometimes wonder if I can cut it in this world.
There are so many emotions that a parent/caregiver and the child goes through.
GUILT. UNDO PRESSURE. FALSE HOPE. UNREALISTIC EXPECTATIONS. JOY. EMOTIONAL ROLLER COASTER. FEAR. CLICKING OF THE CLOCK
When Daniel seems down, I am down. Vice Verse also. I have been down and dragging ALLOT lately, and I am FRICKIN' SICK of it. I wake up in the morning and lay there and say "OK today IS going to be a productive and good day." and when I go to bed at night I lay there and say "WTF? What did we do today? I didn't accomplish even a third of what was on the list to do."
I needed to realize that just because I didn't do EVERYTHING on the list of things to do with Daniel, that I was NOT a failure. That I am NOT letting Daniel down. I am simply human and I can only do so much. I get tired, I have medical issues, I get sick, I have other children and people in my life. I AM NOT SELFISH. I need time to just be a regular ol' mom. I don't always need to be in therapist, advocate, doctor,teacher, wonder mom mode. I need time to just chill, and Daniel needs time to be a typical 3 year old little boy. Every moment of everyday does NOT need to be crammed with some for of "treatment"/"training". I do not need to go to bed every night feeling like I failed my child.
When you are the parent of a SNK (special needs kid) you learn to stop caring about the scores on the tests, and not cry every time someone asks if your child has met the milestone for their age. Don't give a crap about what the other kids are doing, don't panic about the parent/teacher conference. Don't take it to heart when they say that he doesn't "compare" to other kids. Don't wear your heart on your sleeve.
Guess what people?? I don't want him to compare to the other 3 1/2 yr olds out there. Daniel is unique. He was unique from the day he was born. He was unique BEFORE he got all of the diagnosis that he has. And I wouldn't have him any other way. Daniel is a fighter, and damn it....his mom is going to be a fighter too. He may have to teach me some things along the way.
So far he has taught me to not be meek, don't be passive and let people walk all over you. He has taught me to love unconditionally. He has taught me patience (Lonnie stop rolling your eyes!)
He tells me with his eyes.... That he is truly happy. And that = happy mama
So I say:
Get Up and be proud, don't care what people say or do. If they are hurtful, smile at them (and smile because you know in your heart of hearts....that Karma will bite them in the ass one day!)
and smile because you know you truly have an amazing child. You teach your child on your terms, you do what you can for your child, and you love your child. You teach them right from wrong, and you teach them to treat others kindly and with respect no matter of their abilities, disabilities, race, or religion.
And with that being said, I am going to bed.........no I didn't get my whole list of things in with Daniel and I am NOT a failure to my child, and just because he might not measure up on someone else's scale, in the grand scheme of it, who the hell cares? When he's 35 yrs old, do you think anyone is going to say...."well he didn't walk unsupported until he was XX years old".
But I will tell you this...he held a glass today (with no handles) and took a drink!! AND today was the first day he held his own bottle and drank it by HIMSELF! YAW HOOOO!
and as soon as I can figure out how to get it off the cell phone and on here I will!
Saturday, November 15, 2008
Another book review....
Again, my daughter got Daniel another book.
When your child gets ready to start school, or to start going somewhere new.
This would be a great book to send to school ahead of time for the teacher to read to the class, to prep them. Just so maybe it won't be so hard for your child.
This book is called: "A Very Special Critter" by Mercer Mayer
It's about a new student that is coming to school. and just because he uses a wheelchair doesn't make him different. Its a good book for the little ones to see, that just because he's in a wheelchair doesn't mean he can't do things.
I love Amazon, you can pretty much look up the book above, and when the screen populates you can see a bunch of other books that are suggested for special needs. I am all for getting people prepped before hand, so that Daniel or me for the matter don't have to deal with stares. Of course there will always be questions, and I don't mind questions most of the time. Unless of course you're looking down your nose at us!!
So, again Caitlin.....thanks for finding us another winner. We're waiting patiently for the next new book!!!!
When your child gets ready to start school, or to start going somewhere new.
This would be a great book to send to school ahead of time for the teacher to read to the class, to prep them. Just so maybe it won't be so hard for your child.
This book is called: "A Very Special Critter" by Mercer Mayer
It's about a new student that is coming to school. and just because he uses a wheelchair doesn't make him different. Its a good book for the little ones to see, that just because he's in a wheelchair doesn't mean he can't do things.I love Amazon, you can pretty much look up the book above, and when the screen populates you can see a bunch of other books that are suggested for special needs. I am all for getting people prepped before hand, so that Daniel or me for the matter don't have to deal with stares. Of course there will always be questions, and I don't mind questions most of the time. Unless of course you're looking down your nose at us!!
So, again Caitlin.....thanks for finding us another winner. We're waiting patiently for the next new book!!!!
Thursday, November 13, 2008
Nap time?
I would have to be hard pressed to figure out something I enjoy more than the few minutes before Daniel goes down for his nap/bedtime. Its a hard feeling to describe but I will do my best. There is a process to getting Daniel to take a nap. Sometimes its a quick process and sometimes its a bit lengthier than we'd like. :)There is a confession in this post, one that I would generally say I am not too proud of, but one that even though most parents would think its wrong....I love. At the age of 3 yrs old. Daniel is still put to bed. We don't put him in a bed and tell him its nap time or anything like that. We go and we lay down with him. We snuggle, and we pat his butt or back until he falls asleep. And yes. He. still. sleeps. in. our. bed.
When he started having seizures we freaked out, and he slept with us. so we could be there and no if anything happened....and well from then on....its just been the way it is.
Ok, I think that is two confessions, but oh well.
Anyways nothing has a better feeling than him inching his way over to you and curling up against you. It takes a lot of movement for him to get over to you and once he does, he just sucks it up. his face right up to your face. Once this happens though one must be careful. Daniel has this weird obsession with being nose to nose with you and if you should fall asleep, he'll lean his head back slightly and try to suckle on your cheekbone or better yet the tip of your nose. Don't ask why....we don't know. BUT, I can say I have woken up to this a few times and he starts laughing his butt off! Of course, I have also woken up to him starting to do it and he accidentally nips the end of the nose....that hurts (for future reference).
When he does this little trick of his it reminds me of a little kitten that has been taken away from its mother too soon and is just looking for anything to suck on. Its actually pretty funny. Weird but funny. Something we won't let him live down when he grows up!
Anyways, one of us always goes to lay down with him until he falls asleep and then we get back up. It is so very endearing when I have my arm over him patting his back, we are nose to nose, and he flops his arm over my shoulder and tries to pat my back. Or he just tries to pull me closer (perhaps with the hidden agenda of getting me close enough to nose suck!).
Lonnie often says to me, we should just put him in bed and let him fall asleep himself...yeah ok sure. We've created a monster I think. Lonnie also says....what are you gonna do when he's 12? and I just look at him and say, "I'll be patting him on the back and rockin' him to sleep if he wants me too."
Whose got who tied around their finger??
Monday, November 10, 2008
Outta sorts...
There are plenty of times when the alarm goes off in the morning and I just let out this big sigh, and know that I NEED to get out of bed.
Then there are days when the frickin' alarm goes off, and I let out the big sigh and just want to curl up and cry. Some days its so hard to pull myself out of bed let alone get up and do the balancing act that our days entail. Some times you just want to roll over and not get up. I get into these little funks more often than I would like to admit. The funks are tending to take a little bit longer each time to get out of.
Seems like everything always hits at one time. And mind you they don't have to be anything significant. It could just be that the schedule got out of wack because of a little added blurp. Just irritates me. I know in reality that its silly...
So to keep from complaining on here too much....just a few photos/videos and I'll be off.
So to keep from complaining on here too much....just a few photos/videos and I'll be off.
This is a little video on Daniel's idea of fun. You don't hear much from him but I am sure from his facial expression you can tell he loves it. And its a great work out on the legs! (for the person in front not so much for Daniel - although it does stretch his legs some
This video was taken at augmentative therapy. It was the first time we've ever done this. Daniel read a book on the computer and then had to answer questions about the story at the end. I would like to say I would be pretty impressed even if it wasn't my child. At least we know that the ability to retain what he is hearing works.
Saturday, November 8, 2008
Potty Time!
My oldest daughter Caitlin (preschool teacher and children's book collector!) recently gave Daniel this book. When she gave it to us, she said "Oh my gosh you're going to die laughing" She was right. Daniel even gave a couple giggles too! "Its a story of Suzy Sue who had something very important to do..." The truth is, she needs to poo—but someone has snatched her potty away! What an awesomely cute and funny book about potty training!
Another book that we received from here is called:
This book is cute too, it comes with stickers and reward chart to keep track of success. Gives the child the steps and what to do, wipe, wash, flush.....
Another book that we received from here is called:
This book is cute too, it comes with stickers and reward chart to keep track of success. Gives the child the steps and what to do, wipe, wash, flush.....
"Big Boys Use the Potty!" by DK
Now, there is also a class that is offered in my area by a woman that has a bunch of letters after her name (which means she must know something about something!) such as RN, MA, CS, NP and PB&J! Anyways the class is called
Now, there is also a class that is offered in my area by a woman that has a bunch of letters after her name (which means she must know something about something!) such as RN, MA, CS, NP and PB&J! Anyways the class is called
"Making it Happen" Toilet Training the Special Needs Child.
According to Ms. Judith (and Daniel's preschool teacher who has used this method numerous times), this is a task that needs commitment and needs a team to do it. So with the family and school all working together we are starting. She stated that it is time to start potty training when the child remains dry for 1 hour minimum, mental age of 18-24 months, has formed bowel movements, can sit up (supported or non), free from major medical issues, Family is free from stress (OK we almost had it 100% until that little note but we're doing it anyways!) emotionally ready, and finally after age 4 becomes a priority.
So again, because Daniel has an awesome teacher at preschool, we are going to be charting before we actually really consistent make Daniel do the potty. For two weeks we will complete diapers checks. We check Daniel every hour from the time he wakes up and mark it on the chart. If he is dry, we mark it, wet, bm. Obviously if it is dirty you change him but mark it and continue checking hourly. This will be done at home AND also at school. After two weeks, we will figure out a pattern if there is one, if not we will figure out potty times and he WILL be taken every day for the next week at those specified times.
NOTE: YOU MUST HAVE A POWERFUL AWARD for when they do a good job.
This class is a two hour class all with hand outs and ideas, and ways NOT TO LOSE YOUR COOL.
Now with all the books, charts, graphs, correct wording we are going to use and rewards set up we are on our way.....
look at that determination!
It's Potty Time!!
THANK YOU CAITLIN!!
Tagged By Stacy
I was tagged by Stacy .
These things are so hard for me!
8 TV Shows I watch(not in any order)
1. Spongebob (yeah I know!)
2. Mystery Diagnosis
3. Delivery Me
4. Dr. G (medical stuff)
5. Hell's Kitchen (when its the season)
6. American Idol
7. Max and Ruby (children's show)
8. The Biggest Loser
8 Things that happened to me yesterday
(crap I can't even remember what happened to me 2 hours ago!)
1. Took Daniel to therapy
2. Did some ABR on him
3. Cooked dinner
4. Went to my favorite store - JoAnne Fabrics
5. Actually bought 3 Christmas gifts
6. Went to bed early
7. Worked though the night at work
8. Forgot to go to my weekly doctor appt! :? SORRY!!
8 Favorite Places to Eat:
1. Subway
2. Thai Food
3. New China
4. Any place Italian
5. Any place I don't have to cook! :)
6.-
7.-
8.- Can anyone guess why I need to lose weight?!?!
8 Things I am looking forward to:
1. Not working tonight
2. Sleeping in (a little)
3. ABR in February
4. ABR in March with Leonid
5. Summer
6. Getting the bench my brother is building
7. Daniel getting his augmentative device
8. Cleaning the rest of my house tomorrow (YEAH I KNOW I'M SICK...I can't stand disorganization!)
8 Things on my wish list: (can we make it 80?)
1. A good Christmas
2. My sisters ( A & M) to get better
3. My families good health
4. Daniel to continue to strive and keep seizures gone
5. Happiness & less stress
6. To be able to come up with enough money for the rest of the first year of ABR
7. For my sister A not to move! :)
8. For hubby and I to find time to spend together without worries
8 people I tag: I know people hate doing this but, just suck it up and take a few minutes! ;)
Erin, Marcela, Jennifer, Caitlin, Brittany, Alexandra, Tori, Bird (it'll give you something to post about one day! But make sure you don't take away from your ABR hours!)
These things are so hard for me!
8 TV Shows I watch(not in any order)
1. Spongebob (yeah I know!)
2. Mystery Diagnosis
3. Delivery Me
4. Dr. G (medical stuff)
5. Hell's Kitchen (when its the season)
6. American Idol
7. Max and Ruby (children's show)
8. The Biggest Loser
8 Things that happened to me yesterday
(crap I can't even remember what happened to me 2 hours ago!)
1. Took Daniel to therapy
2. Did some ABR on him
3. Cooked dinner
4. Went to my favorite store - JoAnne Fabrics
5. Actually bought 3 Christmas gifts
6. Went to bed early
7. Worked though the night at work
8. Forgot to go to my weekly doctor appt! :? SORRY!!
8 Favorite Places to Eat:
1. Subway
2. Thai Food
3. New China
4. Any place Italian
5. Any place I don't have to cook! :)
6.-
7.-
8.- Can anyone guess why I need to lose weight?!?!
8 Things I am looking forward to:
1. Not working tonight
2. Sleeping in (a little)
3. ABR in February
4. ABR in March with Leonid
5. Summer
6. Getting the bench my brother is building
7. Daniel getting his augmentative device
8. Cleaning the rest of my house tomorrow (YEAH I KNOW I'M SICK...I can't stand disorganization!)
8 Things on my wish list: (can we make it 80?)
1. A good Christmas
2. My sisters ( A & M) to get better
3. My families good health
4. Daniel to continue to strive and keep seizures gone
5. Happiness & less stress
6. To be able to come up with enough money for the rest of the first year of ABR
7. For my sister A not to move! :)
8. For hubby and I to find time to spend together without worries
8 people I tag: I know people hate doing this but, just suck it up and take a few minutes! ;)
Erin, Marcela, Jennifer, Caitlin, Brittany, Alexandra, Tori, Bird (it'll give you something to post about one day! But make sure you don't take away from your ABR hours!)
Friday, November 7, 2008
Don't Underestimate
sister Brittany and DanielOctober 2008
Since Daniel is the busiest 3 year old boy I know, not necessarily because he wants to be but because that is just how it is. Unfortunate as it is, Daniel needs these extra hours of "playtime" (therapy) because of his conditions. Just takes him a tad bit longer (actually it takes me longer to figure out an adaptive way to do it.)
From Day One, we were told that the future is unknown with Daniel. Basically, because of his diagnoses, not to expect too much from him.
"You will just need to learn to deal with his ongoing issues, and realize this might not have been what you were expecting..." DUH? Really??
Well from Day One...people started putting limits on Daniel.
They see he has Cerebral Palsy; "Oh well don't expect that he is going to walk".
They see that he had Infantile Spasms (epilepsy - horrible kind), "Well crap....mental retardation goes along with that."
They see brain malformation and that's the kicked "HOLY CRAP, that ones a douzy, yeah you guys have some issues to deal with there. I'm sorry"
WTF? He is still a living breathing little boy. He is still MY baby. Do NOT LIMIT HIM, because he will just make you eat your words. It may not be tomorrow or the next, it may be years away, but he will do it. And when it happens I will take the reports you gave me saying he wouldn't and I will attach a photo or video of him doing it, and tell you where to shove it :)
Well from Day Two and on, its been a fight, its been difficult. I'm not going to tell you its not all sunshine and happiness, because its not. I'd like to say that Daniel is like every other 3 year old boy out there, but he's not. And for that I am grateful. Seriously. Wouldn't change Daniel if I had a chance, because then he wouldn't be the Daniel I know. Now, if he overcomes certain obstacles on his own, then I welcome it. I will celebrate with him and let everyone I know hear me scream it from the roof tops. As any parent should of their child's accomplishments whether they are typical children or children that are differently-abled.
I am not living with rose colored glasses on....there will be things that he can't do. But don't ask me what they are, because I don't know. He might not be meeting milestones right now, but so what...he's doing it on Daniel time. He is doing what his body is allowing him to do now, the body he fights against each day. Now for his brain....yes you're right there is a brain malformation, big deal....he is probably smarter than the average bear! People just automatically limit him because of a label that a doctor applied to him, when he was just a little boy. And that label is stuck with him for the rest of his life. SUCKS but there isn't really much I can do about that but to help Daniel prove then wrong.
These are things we are working on and will be posting in the future:
- learning to read
- learning to count
- potty training
- sign language
- ECO - Augmentative device (computer)
- counting, sorting, shapes and colors
- sitting up unsupported
- ABR therapy
I am sure there are some of you out there saying I am setting him up for failure. That I will make him feel bad because he WON'T be able to do that. But I will say this in my defense, when you started to teach your "typical" child any of the things listed above, did you stop and say "Ooooh I better not do that, I might be setting him up for failure?" NO! You continued because that is the natural next step correct? Daniel is just like anyone else, he can learn, he is smart, and he understands.....just like your child. And I am not going to treat him any differently than I treated my other children when it comes to the different things - just because someone has labeled him. How do I know he can't do it? Should I assume? (ass - u - me) No, because I have no clue what Daniel has planned out in his head. We might go about it differently than your child does...but in the end, the result will be the same. So does it really matter how he got there? Whether he got to the finish line on his own two feet, or if he got here in a wheelchair?
He still worked at being the best he could be, and got there in the end. It may have taken him longer, but sometimes the victory is so much sweeter if you take your time getting there! ;)
Tuesday, November 4, 2008
Know Your Child - AMENDED
When you become a parent, it is part of your responsibility to know your child. Know when things just aren't right, when they are sad, scared or upset. You just learn these skills.
When you become a parent of a special needs non verbal child, you have to know the same stuff above, but you also have to learn the "feel" of your child. His movements, his facial expressions, the way he holds his body. You have to know this child more than you know yourself basically.
When something comes up that is just not the "normal", alarms go off. Sometimes they are false alarms, and sometimes those alarms caught things in time. Regardless, that alarm goes off, and there is instantly a knot in my stomach and tears in my eyes. There is that fear, that horrible gut wrenching fear, that there is something else wrong with your child.
When the alarm goes off, you react and you react quickly from fear. Then begins the guessing games. Because he is non verbal, and his age (3) he can't answer you with any certainty yet on what the issues are. It sucks. It more than sucks.....it sucks big goose eggs! the whole time you will have this knot, and even after all the tests and the comments of "I'm not sure...." you will still always question.
About two month ago, Daniel started with gagging (right after being weaned from his anti-seizure meds). Immediately I figure its because the drug was stopped. But no, doctors say its reflux. Daniel has never had reflux or thrown up in his life until these episodes (and we didn't change anything but the medicine) so they put him on Reflux meds. It seems to have helped a little, except in the morning when he is ready for another dose. So maybe it is reflux, and maybe it isn't.
About 2 weeks ago, Daniel started with these things we call "startles" (you see little babies do this sometimes like they get the sensation they are falling). He's had these before and we've had EEG and they say they aren't seizures (at that time) so we go through these phases where he'll have these startles for a week or so whenever you lay him down. We generally just work through them. Well now he is having them a lot at night when he is sleeping and his arms flail out and he wakes up crying. Multiple times a night. Not good for the sleeping hours!
Two days ago we notice that Daniel has very sweaty, clammy hands and feet. (Never had this before that we know of) he isn't running a fever....can you guess? Nope me neither but don't look it up on the Internet cause it could be a million and one things, some very scary. And when I look these things up on the Internet and I see that its not very common, what would be the odds?
Well crap, what were the odds of a child getting Infantile Spasms (1:6000)? Or the odds of having a rare brain malformation (when he was diagnosed there were approximately 60 cases known in the U.S.)? What are the odds of a child having Spastic Quad CP without having a traumatic brain injury or a difficult birth(1:1000 full term child)? Pretty Frickin' Odd!!
So when I read that something is odd and not common.....well you do the math. I've got one child who has 3 different things that aren't on the common side.
Now whats our chance of having something else that sucks? Pretty frickin' good.
Of course our odds for winning the lottery aren't as good! Of course.
So, I guess what I'm saying is, as a special needs parent......if you're a special needs parent and reading this, when does the anxiety stop? When do you get to live without fear that something else is going to happen? When do I get to get this knot out of my stomach?
Know your child inside and out, because doctors will guess as much as you as to what is wrong. You are your child's only voice.
AMENDMENT: Also forgot to add in there that he has also started grinding his teeth (that aren't in great shape anyways! AND we are scheduled for a 30 minute EEG tomorrow!
________________________________
On a different note, watch this video. it will amaze you, and it gives me so much hope for Daniel's future.
Watch CBS Videos Online
When you become a parent of a special needs non verbal child, you have to know the same stuff above, but you also have to learn the "feel" of your child. His movements, his facial expressions, the way he holds his body. You have to know this child more than you know yourself basically.
When something comes up that is just not the "normal", alarms go off. Sometimes they are false alarms, and sometimes those alarms caught things in time. Regardless, that alarm goes off, and there is instantly a knot in my stomach and tears in my eyes. There is that fear, that horrible gut wrenching fear, that there is something else wrong with your child.
When the alarm goes off, you react and you react quickly from fear. Then begins the guessing games. Because he is non verbal, and his age (3) he can't answer you with any certainty yet on what the issues are. It sucks. It more than sucks.....it sucks big goose eggs! the whole time you will have this knot, and even after all the tests and the comments of "I'm not sure...." you will still always question.
About two month ago, Daniel started with gagging (right after being weaned from his anti-seizure meds). Immediately I figure its because the drug was stopped. But no, doctors say its reflux. Daniel has never had reflux or thrown up in his life until these episodes (and we didn't change anything but the medicine) so they put him on Reflux meds. It seems to have helped a little, except in the morning when he is ready for another dose. So maybe it is reflux, and maybe it isn't.
About 2 weeks ago, Daniel started with these things we call "startles" (you see little babies do this sometimes like they get the sensation they are falling). He's had these before and we've had EEG and they say they aren't seizures (at that time) so we go through these phases where he'll have these startles for a week or so whenever you lay him down. We generally just work through them. Well now he is having them a lot at night when he is sleeping and his arms flail out and he wakes up crying. Multiple times a night. Not good for the sleeping hours!
Two days ago we notice that Daniel has very sweaty, clammy hands and feet. (Never had this before that we know of) he isn't running a fever....can you guess? Nope me neither but don't look it up on the Internet cause it could be a million and one things, some very scary. And when I look these things up on the Internet and I see that its not very common, what would be the odds?
Well crap, what were the odds of a child getting Infantile Spasms (1:6000)? Or the odds of having a rare brain malformation (when he was diagnosed there were approximately 60 cases known in the U.S.)? What are the odds of a child having Spastic Quad CP without having a traumatic brain injury or a difficult birth(1:1000 full term child)? Pretty Frickin' Odd!!
So when I read that something is odd and not common.....well you do the math. I've got one child who has 3 different things that aren't on the common side.
Now whats our chance of having something else that sucks? Pretty frickin' good.
Of course our odds for winning the lottery aren't as good! Of course.
So, I guess what I'm saying is, as a special needs parent......if you're a special needs parent and reading this, when does the anxiety stop? When do you get to live without fear that something else is going to happen? When do I get to get this knot out of my stomach?
Know your child inside and out, because doctors will guess as much as you as to what is wrong. You are your child's only voice.
AMENDMENT: Also forgot to add in there that he has also started grinding his teeth (that aren't in great shape anyways! AND we are scheduled for a 30 minute EEG tomorrow!
________________________________
On a different note, watch this video. it will amaze you, and it gives me so much hope for Daniel's future.
Watch CBS Videos Online
Saturday, November 1, 2008
Count Daniel out for Halloween
Considering that fall and this time of year is mine and Lonnie's favorite time of the year. The crisp fall air, the pretty colors, and Halloween being Lonnie's fav holiday....one would think that it would rub off on Daniel. He does indeed like to play with all the pumpkin guts.
This year we decided that Daniel couldn't be anything baby'ish anymore cause he's such a big boy so we decided that oooh how about little Frankenstein. Couldn't find a costume so figured I'd make one. I don't know what was going through my head at the moment, considering I didn't even have a pattern. What the hell was I thinking? So I began the project and well needless to say, it didn't turn out how I had it pictured in my head. Lonnie ended up going to the store an buying him a costume, which he ended up wearing for less than 30 minutes because.....HE DOES NOT LIKE HALLOWEEN!! But he was very good for me to put on his make up. So...........ta da, a little vampire. And Lonnie ended up wearing the Frankenstein head that I made (originally for Daniel)
And below, you will see how Daniel truly feels about Halloween....(click on the picture to see it up close) Daniel was fine with his sister and her friends (on their way to a Halloween party) then Lonnie comes up all dressed up and....well you see the results.
Daniel ended up going trick or treating to about 6 houses down the street and decided that he couldn't handle it and the stress was too much. He came home and passed out candy. He was a much happier little boy after that!
This year we decided that Daniel couldn't be anything baby'ish anymore cause he's such a big boy so we decided that oooh how about little Frankenstein. Couldn't find a costume so figured I'd make one. I don't know what was going through my head at the moment, considering I didn't even have a pattern. What the hell was I thinking? So I began the project and well needless to say, it didn't turn out how I had it pictured in my head. Lonnie ended up going to the store an buying him a costume, which he ended up wearing for less than 30 minutes because.....HE DOES NOT LIKE HALLOWEEN!! But he was very good for me to put on his make up. So...........ta da, a little vampire. And Lonnie ended up wearing the Frankenstein head that I made (originally for Daniel)
And below, you will see how Daniel truly feels about Halloween....(click on the picture to see it up close) Daniel was fine with his sister and her friends (on their way to a Halloween party) then Lonnie comes up all dressed up and....well you see the results.
Daniel ended up going trick or treating to about 6 houses down the street and decided that he couldn't handle it and the stress was too much. He came home and passed out candy. He was a much happier little boy after that!
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