One of the many reasons we made the difficult decision to move all the way across the country was that we knew that a certain neurologist worked at Seattle Children's Hospital. This neurologist is the only neurologist in the country (world maybe?) who is studying the role of genetics in brain abnormalities like the one that Daniel has. In fact, this neurologist is the one that (after having a bad experience with the neurologist at UVA) first diagnosed Daniel with Cerebral Vermis Hypoplasia (CVH). All he did was look at Daniel's MRI.
At the time he was working in Chicago and we just figured we would never meet him in person. We were wrong--never say never. In less than two weeks we will finally go see him!
I am not sure why I am so nervous, hopeful, excited about seeing this particular neurologist. In general, a neurologist is not the one who helps Daniel every day of his life. In fact, not since his first year have we dealt with a neurologist of any kind, knowing that Daniel will only improve with the physical therapy, occupational therapy, speech therapy and special education teachers. A neurologist knows what is happening in the brain, but cannot perform the tasks of helping the brain to grow. And yet knowing all of this I still have hope and faith in the neurologist and hope that he will give us more than we've ever gotten from a neurologist before.
Because he is the man. He is the one who is leading the research on what Daniel has. He is the one who may someday (in the near future?) have the answers that we all long to have. The reasons why and the ways to make it better.
Am I putting too much faith in this one guy? Sure. Do I have every right to want this person to be a miracle worker? You bet!
The other night in the bed, Daniel and I were hanging out. He is very much into counting to ten these days and very proud of himself when he does, "Great job!" He won't actually count things though, he just counts. I was trying to get him to count his toes and it reminded me of when he was born. Just like when his sister was born, I counted to make sure he had all ten fingers and all ten toes. Thinking that as long as he did, then everything was okay. Yeah, life is not that simple.
Wednesday, August 7, 2013
Friday, July 12, 2013
There's no way out of here
We moved! Across the country! It was a bit hairy but we all got here in one piece and we are slowly settling in. The first several days were difficult because Daniel did not want to sleep in his new room. We think it was because he has slept in hotel rooms with all of us for ten days, anyone would be confused by that. We managed to try to make the trip interesting, though we were also trying to get out here in a good amount of time too.
The most difficult part of the entire move for me has been Daniel's reaction. Because of his developmental delays he does not and has not been able to fully understand the whole idea of moving. He would keep asking to "go home" when we were stopping every night in a new hotel, and we tried but couldn't explain to him that we were moving to a new home. It almost felt as though we were taking him from his home and never returning him. I felt so bad. What was even worse was coming here and not having him sleep. He would cry bloody murder in his room as though we were torturing him. We didn't know what to do, and being exhausted ourselves we did not respond well to him getting out of his bed and also to each other. I felt alone and kept thinking about how our lives would never change and how Daniel would never learn. I keep thinking of a particular song that reminds me of our situation by David Gilmour:
There's no way out of here
When you come in
You're in for good
There was no promise made
The part you played
The chance you took
There are no boundaries set
The time and yet
You waste it still
So it slips through your hands
Like grains of sand
You watch it go
There's no time to be lost
You'll pay the cost
So get it right
There's no way out of here
When you come in
You're in for good
There never was there an answer
There an answer
Not without listening
Without seeing
There are no answers here
When you look out
You don't see in
There was no promise made
The part you played
The chance you took
There's no way out of here
When you come in
You're in for good
There never was there an answer
There an answer
Not without listening
Without seeing
There's no way out of here
When you come in
You're in for good
There was no promise made
The part you played
The chance you took
There's no way out of here
When you come in
You're in for good
There's no way out of here
When you come in
You're in for good
There are no answers here
When you look out
You don't see in
There's no way out of here
When you come in
You're in for good
The most difficult part of the entire move for me has been Daniel's reaction. Because of his developmental delays he does not and has not been able to fully understand the whole idea of moving. He would keep asking to "go home" when we were stopping every night in a new hotel, and we tried but couldn't explain to him that we were moving to a new home. It almost felt as though we were taking him from his home and never returning him. I felt so bad. What was even worse was coming here and not having him sleep. He would cry bloody murder in his room as though we were torturing him. We didn't know what to do, and being exhausted ourselves we did not respond well to him getting out of his bed and also to each other. I felt alone and kept thinking about how our lives would never change and how Daniel would never learn. I keep thinking of a particular song that reminds me of our situation by David Gilmour:
There's no way out of here
When you come in
You're in for good
There was no promise made
The part you played
The chance you took
There are no boundaries set
The time and yet
You waste it still
So it slips through your hands
Like grains of sand
You watch it go
There's no time to be lost
You'll pay the cost
So get it right
There's no way out of here
When you come in
You're in for good
There never was there an answer
There an answer
Not without listening
Without seeing
There are no answers here
When you look out
You don't see in
There was no promise made
The part you played
The chance you took
There's no way out of here
When you come in
You're in for good
There never was there an answer
There an answer
Not without listening
Without seeing
There's no way out of here
When you come in
You're in for good
There was no promise made
The part you played
The chance you took
There's no way out of here
When you come in
You're in for good
There's no way out of here
When you come in
You're in for good
There are no answers here
When you look out
You don't see in
There's no way out of here
When you come in
You're in for good
Monday, June 10, 2013
Travel Woes
We are gearing up for our BIG trip! The biggest one ever! We are going across country! Since we are moving to Washington state and we live in Virginia, we will be traveling across the country. This will be an adventure for sure. Especially with two kids in tow. While we intend to try to visit some interesting sites along the way (Mount Rushmore and Yellowstone), it will still be a lot of driving. Daniel has not been such a good passenger lately. When we are out for too long or out late at night he gets very upset and almost has a fit in a way. He is so overtired or just wants to be home. It is really very sad, he cries and cries and asks for Pickles-the-cat.
We will also be staying in a lot of hotels along the way which he is not fond of since we all sleep in the same room and either Jason or I need to sleep with him. He cannot fall asleep as well and also has difficulty sleeping well. Thus so do we. It also affects Alison because when he cannot fall asleep then she cannot. It makes for a bad night and something I, for one, am not looking forward to. I mean, I know we will have fun along the way but then I just worry, worry about the nights, the sleepless nights. Then worry about the days after that. It is difficult sometimes. We really want to take Daniel everywhere but then it is very difficult to also take them everywhere and not be sad about what could have been, what vacations would be like.
We will also be staying in a lot of hotels along the way which he is not fond of since we all sleep in the same room and either Jason or I need to sleep with him. He cannot fall asleep as well and also has difficulty sleeping well. Thus so do we. It also affects Alison because when he cannot fall asleep then she cannot. It makes for a bad night and something I, for one, am not looking forward to. I mean, I know we will have fun along the way but then I just worry, worry about the nights, the sleepless nights. Then worry about the days after that. It is difficult sometimes. We really want to take Daniel everywhere but then it is very difficult to also take them everywhere and not be sad about what could have been, what vacations would be like.
Wednesday, February 20, 2013
By George I've Got It...Now What Do I Do With It??
It was a moment of epiphany.
Okay, maybe just a moment of clarity.
I am awake at this hour (4:30am) after watching Frontline. They had a story about Newtown, CT. Need I say more? In it, though they delved deep into the shooter's life and focused a while on his special needs issues. In one segment they discuss his diagnosis of Sensory Processing Disorder.
Ding Ding! I woke up my brain a bit.
I think we've mentioned on here before but Daniel hits and kicks. He doesn't do this to be mean and really it is out of his personality of a sweet sweet boy. We've been trying hard to try to help him understand that this is not behavior that we allow. Daniel does have Sensory issues, but now I realize that the hitting and kicking are a part of that!!! I know now that we were right all along--Daniel is sweet and not at all trying to be mean! YES!
Okay though...How the hell do we help him now??
Okay, maybe just a moment of clarity.
I am awake at this hour (4:30am) after watching Frontline. They had a story about Newtown, CT. Need I say more? In it, though they delved deep into the shooter's life and focused a while on his special needs issues. In one segment they discuss his diagnosis of Sensory Processing Disorder.
Ding Ding! I woke up my brain a bit.
I think we've mentioned on here before but Daniel hits and kicks. He doesn't do this to be mean and really it is out of his personality of a sweet sweet boy. We've been trying hard to try to help him understand that this is not behavior that we allow. Daniel does have Sensory issues, but now I realize that the hitting and kicking are a part of that!!! I know now that we were right all along--Daniel is sweet and not at all trying to be mean! YES!
Okay though...How the hell do we help him now??
Wednesday, January 9, 2013
Strange Things Are Happening
I think of that song from Toy Story when I think about what is going on with Daniel. He has been doing a lot more these past few weeks/months. At school he is using his hands more and more to touch and feel things that he would never have touched before due to his sensitivity. His verbal skills continue to improve each day as he learns to combine new words into sentences that actually make very good sense. The biggest change however is his strength in his legs. Over the winter break he actually climbed the stairs in our house by putting his hands on the step above and then bringing one leg up then the other leg up. Then yesterday, I got and email from his physical therapist:
"Daniel WALKED up 11 steps today at school twice! He held the railing with his right hand and my hand with his left. He did a step to gait pattern (each feet touch each step) for all but one step which he stepped through! All of this was done with minimal assistance from me. It was awesome and he was very proud! He also bumped down the flight between the two trials. We sat at the top and I had my arm wrapped around his back and one of his hands in my hands. I'd say 1, 2, 3, bump and he would slide his feet out and lower to the next step. Then I'd say, my turn and I would bump. He did all 11 steps. On the 7th step he said 1, 2, 3, bump and did it without me AND he did the last 3 steps without stopping. So sorry I didn't have the camera but I had to share!
Please know that he is still worried so he tries to sit as soon as you get to the top step....he needs to be moved to a safe place to catch his breath and receive claps and hugs."
It is starting like this in these instances that are here and there but becoming closer. I know it and can feel it in my bones that one day very soon we will be letting the world know that Daniel walked on his own. We are so proud of our little man and all he has accomplished. He just keeps chugging along and continues to inspire us all!
"Daniel WALKED up 11 steps today at school twice! He held the railing with his right hand and my hand with his left. He did a step to gait pattern (each feet touch each step) for all but one step which he stepped through! All of this was done with minimal assistance from me. It was awesome and he was very proud! He also bumped down the flight between the two trials. We sat at the top and I had my arm wrapped around his back and one of his hands in my hands. I'd say 1, 2, 3, bump and he would slide his feet out and lower to the next step. Then I'd say, my turn and I would bump. He did all 11 steps. On the 7th step he said 1, 2, 3, bump and did it without me AND he did the last 3 steps without stopping. So sorry I didn't have the camera but I had to share!
Please know that he is still worried so he tries to sit as soon as you get to the top step....he needs to be moved to a safe place to catch his breath and receive claps and hugs."
It is starting like this in these instances that are here and there but becoming closer. I know it and can feel it in my bones that one day very soon we will be letting the world know that Daniel walked on his own. We are so proud of our little man and all he has accomplished. He just keeps chugging along and continues to inspire us all!
Sunday, November 18, 2012
Where do we go from here
Being a mom of a special needs child, it is very difficult not to look at what you are missing out on. We are a normal family from the outside. Mother, Father, Daughter, Son. Mother and Father both work outside the home. We come home, make dinner, get the kids ready for bed, clean dinner dishes, put kids to bed and then soon after we fall asleep ourselves. We have a daughter who does before and after school activities. We both have meetings at work and sometimes work late or have to travel for our work or other professional interests. We save most of our family chores for the weekend when we have days off that we can devote to all the things we missed during the week...food shopping, laundry, cleaning, yard work and sometimes we have time left over for something fun.
What are those choices? We can take our daughter to a movie if one of us stays home with Daniel since he doesn't really like loud noises and would probably talk during the movie (we don't really know since we've never taken him). We can take the kids to the playground and there is a nearby special needs playground nearby that both kids love. This proves to be a nice hour to hour and a half excursion if it is a nice day--not too hot and not too cold. The children's museum is indoors but our daughter has outgrown it and for the most part Daniel is not interested.
Having Alison first spoiled us in many ways--she had/has such an imagination and was/is able to play for hours on end with just a stick and a rock. Daniel has never really been into toys until more recently but not as much. We can see him play for maybe a half hour tops but then it always comes back to TV.
Yes, the dreaded television. Daniel has become so into television and it is part our fault as well because what do you do with a boy who does not like toys much and who doesn't walk or play with other peers on the weekend? Where do we go from here? We are stuck. We have a rut so to speak. What do we do? We are not in a position to spend much money so going places that require a lot of money is not really an option. We want to get out, be active, do more with our kids but how? With Daniel how? We need help. We need something to save us from the spiral that we are going down.
What are those choices? We can take our daughter to a movie if one of us stays home with Daniel since he doesn't really like loud noises and would probably talk during the movie (we don't really know since we've never taken him). We can take the kids to the playground and there is a nearby special needs playground nearby that both kids love. This proves to be a nice hour to hour and a half excursion if it is a nice day--not too hot and not too cold. The children's museum is indoors but our daughter has outgrown it and for the most part Daniel is not interested.
Having Alison first spoiled us in many ways--she had/has such an imagination and was/is able to play for hours on end with just a stick and a rock. Daniel has never really been into toys until more recently but not as much. We can see him play for maybe a half hour tops but then it always comes back to TV.
Yes, the dreaded television. Daniel has become so into television and it is part our fault as well because what do you do with a boy who does not like toys much and who doesn't walk or play with other peers on the weekend? Where do we go from here? We are stuck. We have a rut so to speak. What do we do? We are not in a position to spend much money so going places that require a lot of money is not really an option. We want to get out, be active, do more with our kids but how? With Daniel how? We need help. We need something to save us from the spiral that we are going down.
Tuesday, October 2, 2012
More Bang for the Buck
Daniel had a dentist appointment yesterday. It is clear that in this one area my kids are not mine since they do not try to hide for several weeks at the mention of a dentist appointment. My kids actually like the dentist. This is a good thing because I am pretty certain I caused my own dentist a lot of physical pain and I don't think that needs to continue.
Daniel has been to the dentist a total of 6 times (once per year) and he keeps getting better and better. When we first took him (due to his sensitivities in his mouth) he had to be held in my lap with several assistants and the dentist all holding him down. Then while he screamed, the dentist could peak inside his mouth. Like I said, he is getting better. Yesterday had him sitting in the chair all by himself just like a big boy. The dental assistant was showing him all the equipment to make him feel more comfortable. She let him hold a bigger (and plastic) version of the mirror they put in your mouth. I was surprised and impressed when she asked Daniel if her mirror was bigger and he said, "Nooooo." Then she asked him who has the bigger mirror and right away he said, "ME!"
Waiting for the dentist took a little while but Daniel happily talked and talked and looked around the room. When the dentist came in, we decided to leave him in the exam chair and I just held his legs (so he wouldn't kick the poor man) and his hands. He didn't scream and actually opened his mouth every now and then. Enough for the dentist to take a look and do a little brushing. No Cavities!
Daniel has actually been saying for months that his, "teeth hurt." With Daniel, it is difficult to know if he really does hurt somewhere or if he just heard someone say that and is repeating it. Nevertheless, since it went on for so long we wanted to check it out. Low and behold Daniel is getting his 6 year molars in and they can push on all the other teeth and cause pain. The dentist wasn't too concerned with them right now.
I started to ask the dentist and it was interesting that he knew exactly what I was about to ask. My question: "Will there come a time...?" The dentist knew. Yes, he said there will be a time but not until we take him in and he can have "more bang for the buck." So, if his molars cause his front teeth to become crooked and then they start to develop plaque then we would take him to the hospital and the dentist could remove some baby teeth and seal the molars and straighten the front teeth and do a cleaning all under "one roof." It was interesting how he explained to me all very casually. Very much as if this happens to all children (which I know it does not). He was very matter-of-fact and just knew what I was asking and what I needed to hear--we will not put Daniel under unless we really really need to. I think he would've been a great dentist for me, I am sure he wouldn't have been upset with me when I kicked him right in the...Ah well, so we got that all checked out.
Now this morning Daniel said his eye was hurting. My response: "Oh my goodness!" His response: "Oh my goodness!"
Daniel has been to the dentist a total of 6 times (once per year) and he keeps getting better and better. When we first took him (due to his sensitivities in his mouth) he had to be held in my lap with several assistants and the dentist all holding him down. Then while he screamed, the dentist could peak inside his mouth. Like I said, he is getting better. Yesterday had him sitting in the chair all by himself just like a big boy. The dental assistant was showing him all the equipment to make him feel more comfortable. She let him hold a bigger (and plastic) version of the mirror they put in your mouth. I was surprised and impressed when she asked Daniel if her mirror was bigger and he said, "Nooooo." Then she asked him who has the bigger mirror and right away he said, "ME!"
Waiting for the dentist took a little while but Daniel happily talked and talked and looked around the room. When the dentist came in, we decided to leave him in the exam chair and I just held his legs (so he wouldn't kick the poor man) and his hands. He didn't scream and actually opened his mouth every now and then. Enough for the dentist to take a look and do a little brushing. No Cavities!
Daniel has actually been saying for months that his, "teeth hurt." With Daniel, it is difficult to know if he really does hurt somewhere or if he just heard someone say that and is repeating it. Nevertheless, since it went on for so long we wanted to check it out. Low and behold Daniel is getting his 6 year molars in and they can push on all the other teeth and cause pain. The dentist wasn't too concerned with them right now.
I started to ask the dentist and it was interesting that he knew exactly what I was about to ask. My question: "Will there come a time...?" The dentist knew. Yes, he said there will be a time but not until we take him in and he can have "more bang for the buck." So, if his molars cause his front teeth to become crooked and then they start to develop plaque then we would take him to the hospital and the dentist could remove some baby teeth and seal the molars and straighten the front teeth and do a cleaning all under "one roof." It was interesting how he explained to me all very casually. Very much as if this happens to all children (which I know it does not). He was very matter-of-fact and just knew what I was asking and what I needed to hear--we will not put Daniel under unless we really really need to. I think he would've been a great dentist for me, I am sure he wouldn't have been upset with me when I kicked him right in the...Ah well, so we got that all checked out.
Now this morning Daniel said his eye was hurting. My response: "Oh my goodness!" His response: "Oh my goodness!"
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