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.
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