We found out! Well, we have some very basic knowledge at last of what may very well be the cause of Daniel's everything. His developmental delay, his cerebral vermis hypoplasia, his hypotonia and more issues. Get this: it is one gene and it is a deletion from the gene. The gene is BCL11A.
The research assistant explained it like this: If the gene were the word Supercalifragilisticexpialidocious, then Daniel would be missing the "cali" part. Think about that! That "cali" part is what has done this?! Can your mind even go there because mine cannot! It is insane! So far though, that is what we have.
What does it mean for Daniel? A whole lot of nothing at this point. It means we keep on doing the day to day stuff. We keep on raising him like there is no limit. We keep bringing him with us to unique places and we keep loving him like we love him--with all of our heart. So Supercalifragilisticexpialidocious to you all!
Tuesday, June 2, 2015
Wednesday, April 15, 2015
There's the rub
Life gets in the way of us updating this blog sooner. As I am sure you can imagine, things have been busy. First, Daniel is doing great! He loves school, is happy as usual and is learning new things everyday! Daniel has been making great strides in walking on his own here at home and at school. It is so great to see. He is very inquisitive and wants to know what everything is and what everything does. He still loves to sing and has a great voice and knows how to carry a tune...any tune.
Time flies and it is amazing it is Spring already. We keep busy with Daniel's appointments and our daughter's sports and help with homework/projects. It should be no surprise to anyone that we have been struggling since moving to this area. With Jason the only one working full-time, it has been difficult to get ahead in any way. We have been fortunate to have family help us, though that help will soon need to end. In a few weeks, I will temporarily be covering for a dietitian and working full-time which will help in terms of money, but Jason has finally realized what that means for us. You see, if Daniel were neurotypical, we could have him stay after-school in an after-school program. We could have our daughter come home and stay home by herself for a little while. She could look after her brother for a bit. All this would allow us to work until 4:30 or 5pm and come home and not worry about the kids. Well, worry in different ways. However, Daniel is special needs. Our daughter is capable of many things but he needs many more. So, we are lucky that we have my parents here and we don't need to pay them, but they are not getting any younger and Daniel keeps growing. The reality is that we will eventually need to pay someone and of course that someone will need to be someone who is not a teenager, but one who has had more training. That is costly. So where will our money go from working full-time? Right. We thank our lucky stars for my parents. Though what happens when the temporary position ends and we don't have help financially. How do we get ahead? How do we get ahead let alone even try to be independent. You see the problem? You see what is wrong here? We need a break!
Time flies and it is amazing it is Spring already. We keep busy with Daniel's appointments and our daughter's sports and help with homework/projects. It should be no surprise to anyone that we have been struggling since moving to this area. With Jason the only one working full-time, it has been difficult to get ahead in any way. We have been fortunate to have family help us, though that help will soon need to end. In a few weeks, I will temporarily be covering for a dietitian and working full-time which will help in terms of money, but Jason has finally realized what that means for us. You see, if Daniel were neurotypical, we could have him stay after-school in an after-school program. We could have our daughter come home and stay home by herself for a little while. She could look after her brother for a bit. All this would allow us to work until 4:30 or 5pm and come home and not worry about the kids. Well, worry in different ways. However, Daniel is special needs. Our daughter is capable of many things but he needs many more. So, we are lucky that we have my parents here and we don't need to pay them, but they are not getting any younger and Daniel keeps growing. The reality is that we will eventually need to pay someone and of course that someone will need to be someone who is not a teenager, but one who has had more training. That is costly. So where will our money go from working full-time? Right. We thank our lucky stars for my parents. Though what happens when the temporary position ends and we don't have help financially. How do we get ahead? How do we get ahead let alone even try to be independent. You see the problem? You see what is wrong here? We need a break!
Tuesday, November 25, 2014
It's just not fair
Yesterday was a long day. We picked up Daniel early from school and took him to Seattle Children's Hospital to see THE doctor again. We were checking in with the doctor, not because of anything new, but because we just needed to follow-up and discuss a few things with him.
Daniel is able to make friends anywhere he goes, so naturally he was saying hello to everyone who walked past him. Some stopped to say hello to him as well. He was very interested in seeing the doctor and kept saying his name over and over. We had the appointment at 2pm, but arrived early and sat in the waiting room for about a half hour. The doctor was prompt and was very interested in Daniel's teeth. Daniel has recently lost a lot of his top teeth and the doctor was struck at just how small his teeth are. The doctor (since he is a geneticist as well) said that there are thousands of genetic syndromes, but only a handful that cause dental problems. He also went on to look at Daniel's face in general which has always had some unique parts to it. Under his eyes it is sunken in a bit, his nose has a tip that goes under and it is flat from the nose to the mouth. His earlobes are almost non-existent. All of these things can be or may be involved in an underlying genetic syndrome though the question is what one. The doctor spent some time researching while in the exam room. He then explained that Daniel had dyspraxia which explains why Daniel can lay down and move his legs with no problem but gets up and cannot walk well. We asked about Daniel's head shake that he has always had and he attributes that to posturing. We discussed Daniel's future as we had last time and he was giving us a bleak outlook on how long we could potentially care for Daniel before we start to get too old.
After he left, he came back rather quickly with a colleague who had a few suggestions. He wanted to see if Daniel's penis was small (which it is). This guy had a New Zealand accent so just try to picture a guy saying that in that kind of accent. Our doctor and the other doctor were talking about what other genetic tests to run and what types of syndromes that may be indicated. Finally both doctors were finished. Then Daniel needed to get his picture taken (his face and his genitals). Then it was time for blood work. We went to the lab and waited another 20 minutes or so. Daniel actually did really well for getting his blood taken. Then we left. We left at 4:30pm.
When we got home, Jason was walking Daniel up the stairs and Daniel took an added step and leaned back causing both Jason and Daniel to fall down the stairs. Daniel got a bump on his head and Jason and I both added many gray hairs to our heads. It was definitely not a good end to a long afternoon.
Last night, feeling sorry for ourselves, Jason was trying to figure out where we need to move that has the best care for adults with developmental delays. He was also upset at our financial situation which really hasn't gotten much better and we were both just thinking, it is just not fair.
Daniel is able to make friends anywhere he goes, so naturally he was saying hello to everyone who walked past him. Some stopped to say hello to him as well. He was very interested in seeing the doctor and kept saying his name over and over. We had the appointment at 2pm, but arrived early and sat in the waiting room for about a half hour. The doctor was prompt and was very interested in Daniel's teeth. Daniel has recently lost a lot of his top teeth and the doctor was struck at just how small his teeth are. The doctor (since he is a geneticist as well) said that there are thousands of genetic syndromes, but only a handful that cause dental problems. He also went on to look at Daniel's face in general which has always had some unique parts to it. Under his eyes it is sunken in a bit, his nose has a tip that goes under and it is flat from the nose to the mouth. His earlobes are almost non-existent. All of these things can be or may be involved in an underlying genetic syndrome though the question is what one. The doctor spent some time researching while in the exam room. He then explained that Daniel had dyspraxia which explains why Daniel can lay down and move his legs with no problem but gets up and cannot walk well. We asked about Daniel's head shake that he has always had and he attributes that to posturing. We discussed Daniel's future as we had last time and he was giving us a bleak outlook on how long we could potentially care for Daniel before we start to get too old.
After he left, he came back rather quickly with a colleague who had a few suggestions. He wanted to see if Daniel's penis was small (which it is). This guy had a New Zealand accent so just try to picture a guy saying that in that kind of accent. Our doctor and the other doctor were talking about what other genetic tests to run and what types of syndromes that may be indicated. Finally both doctors were finished. Then Daniel needed to get his picture taken (his face and his genitals). Then it was time for blood work. We went to the lab and waited another 20 minutes or so. Daniel actually did really well for getting his blood taken. Then we left. We left at 4:30pm.
When we got home, Jason was walking Daniel up the stairs and Daniel took an added step and leaned back causing both Jason and Daniel to fall down the stairs. Daniel got a bump on his head and Jason and I both added many gray hairs to our heads. It was definitely not a good end to a long afternoon.
Last night, feeling sorry for ourselves, Jason was trying to figure out where we need to move that has the best care for adults with developmental delays. He was also upset at our financial situation which really hasn't gotten much better and we were both just thinking, it is just not fair.
Monday, October 13, 2014
Learning More Everyday
It is no secret that Daniel is developmentally delayed in all areas. He is physically delayed and speech and of course mental delays as well. It has been a while since he has been tested, but the last time it was, there was a marked point in which he is more than "2 standard deviations below." That is (of course) IEP speak for your son is mentally challenged. Of course, it was worded differently in the IEP (a bit harsh for my taste). All of this is on the standard scoring--measuring Daniel up to his peers, where he will always lag behind. It does not take into account Daniel's own bell curve and his own unique learning that happens subtly and in such small amount that sometimes you don't know it until it hits you in the face!
Daniel started school on September 2nd and he gets a ride to and from school. The ride is about 10 minutes long and his driver is a nice man from Ethiopia. After just a few days he and his driver had already hit it off with his driver calling him, "Danny-boy," "Sweetie-boy." Everyone loves Daniel. I think his driver figured out early on too that Daniel responds really well to music and singing. So, before the month of September was over, we heard Daniel singing something but we could not figure out. It wasn't in English. We listened for a bit and finally realized it was the Ethiopian National Anthem. Daniel was singing it! Daniel has also learned to count to 5 in Amharic as well.
Now, if someone wants to categorize Daniel in some way as to say that he is not smart, then I will point them to this video and ask if they can count to 5 in Amharic. And to Daniel we just ask, "Why are you so smart!"
Daniel started school on September 2nd and he gets a ride to and from school. The ride is about 10 minutes long and his driver is a nice man from Ethiopia. After just a few days he and his driver had already hit it off with his driver calling him, "Danny-boy," "Sweetie-boy." Everyone loves Daniel. I think his driver figured out early on too that Daniel responds really well to music and singing. So, before the month of September was over, we heard Daniel singing something but we could not figure out. It wasn't in English. We listened for a bit and finally realized it was the Ethiopian National Anthem. Daniel was singing it! Daniel has also learned to count to 5 in Amharic as well.
Now, if someone wants to categorize Daniel in some way as to say that he is not smart, then I will point them to this video and ask if they can count to 5 in Amharic. And to Daniel we just ask, "Why are you so smart!"
Saturday, June 28, 2014
Wonder
I have been reading the book Wonder with our daughter. If you have a child in the middle school/5th or 6th grade age range then I do recommend it. The book starts with a quote from a song that I haven't heard in a long while but struck me as not only relevant to the book but to Daniel as well. I played it the other day and then looked up the lyrics and found that they are very much relevant to having a child with special needs. I wonder if Natalie Merchant had a child with special needs or a sibling with special needs but it really speaks to me as a parent of a special needs child:
"Wonder"
Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing
They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation
Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story
They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation
O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way
People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation
O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way
It's been a difficult few months dealing with many many things around here. Daniel is expressing much of what he doesn't like, but does not always back that up with what he does like instead. This means that he has been very disagreeable with many suggestions often saying or crying or yelling "no." While we appreciate he is not happy with something and lets us know, it is most frustrating not knowing an appropriate solution.
Another thing he has decided to adapt well to, is having tantrums when he doesn't get his way. Since he is not a 2 year old, but an almost 8 year old with these tantrums, this has been somewhat dangerous to each and every one of us and we have all lost our cool at one point or another during these times. I have been scratched and kicked in the head or my hair pulled and the same for Alison and Jason. We have all cried or gotten upset and we have all lost our patience even though we know that he has sensory issues and that getting angry won't help.
We have also been asked difficult questions of our 11 year old such as: "Is it more difficult having a child with special needs?" Or, "Will Daniel ever live on his own?" These always force us to look far into the future and to have to see the dependence that Daniel will most likely need. These force us to see a future that does not appear to look very different from the present. The future looks hard, very hard as it has been in the past with more challenges and physical and mental exhaustion. No one could ever ever imagine in their wildest dreams what it is like to have a child with special needs. The whole life-changing reality of it all.
"Wonder"
Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing
They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation
Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story
They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation
O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way
People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation
O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way
It's been a difficult few months dealing with many many things around here. Daniel is expressing much of what he doesn't like, but does not always back that up with what he does like instead. This means that he has been very disagreeable with many suggestions often saying or crying or yelling "no." While we appreciate he is not happy with something and lets us know, it is most frustrating not knowing an appropriate solution.
Another thing he has decided to adapt well to, is having tantrums when he doesn't get his way. Since he is not a 2 year old, but an almost 8 year old with these tantrums, this has been somewhat dangerous to each and every one of us and we have all lost our cool at one point or another during these times. I have been scratched and kicked in the head or my hair pulled and the same for Alison and Jason. We have all cried or gotten upset and we have all lost our patience even though we know that he has sensory issues and that getting angry won't help.
We have also been asked difficult questions of our 11 year old such as: "Is it more difficult having a child with special needs?" Or, "Will Daniel ever live on his own?" These always force us to look far into the future and to have to see the dependence that Daniel will most likely need. These force us to see a future that does not appear to look very different from the present. The future looks hard, very hard as it has been in the past with more challenges and physical and mental exhaustion. No one could ever ever imagine in their wildest dreams what it is like to have a child with special needs. The whole life-changing reality of it all.
Sunday, March 9, 2014
When HE gives up fighting
I am pretty sure I have stated on here how it is difficult to communicate with Daniel about how he is feeling. He likes to say that his ear hurts or that his teeth hurt, but he is saying it more for the reaction he gets from us (another dramatic person in the family). When he is truly sick, we actually have no idea what is bothering him.
On Friday I got a call from school saying that Daniel fell and hit his chin. There was no question to them that he would need stitches or at the very least need to be seen by the doctor. I went to get him and the funny thing is that his teacher said he did not cry at all. When I got to his school he was eating his lunch and talking and talking and had just a bit of blood dropping from his chin. He was happy! I knew though, that he wouldn't be happy at the doctors office.
I took him immediately to the pediatricians office and once the doctor saw him she said it would have to be either stitches or glue. Since Daniel does not enjoy having band aids or anything on him, they went with glue so that if he pulled at it, he wouldn't be pulling out the stitches. Before they worked on him though, they needed to clean and numb the area. Of course that meant he needed to lay down and be still. Now whenever we have taken him to the hospital (for dehydration) or even the doctors office or the dentist, he is very reluctant to stay still. It doesn't matter how much you tell him that everything will be okay and that it won't be long, he doesn't understand and fights to get off the table. For a little boy, he is very strong and it usually takes a good 3 to 4 adults to hold him still. I am reluctantly one of those adults. It is not easy and Daniel does not help when he kicks and screams, but that part I am okay with. For it is actually when he stops putting up the fight and surrenders like a hunted animal caught in its prey that I feel the most sorrow. After a while he gives up and part of me (even though I know that it would hurt me physically) wants to scream at the top of my lungs: "Don't give up Daniel! Don't you ever give up the fight!"
On Friday I got a call from school saying that Daniel fell and hit his chin. There was no question to them that he would need stitches or at the very least need to be seen by the doctor. I went to get him and the funny thing is that his teacher said he did not cry at all. When I got to his school he was eating his lunch and talking and talking and had just a bit of blood dropping from his chin. He was happy! I knew though, that he wouldn't be happy at the doctors office.
I took him immediately to the pediatricians office and once the doctor saw him she said it would have to be either stitches or glue. Since Daniel does not enjoy having band aids or anything on him, they went with glue so that if he pulled at it, he wouldn't be pulling out the stitches. Before they worked on him though, they needed to clean and numb the area. Of course that meant he needed to lay down and be still. Now whenever we have taken him to the hospital (for dehydration) or even the doctors office or the dentist, he is very reluctant to stay still. It doesn't matter how much you tell him that everything will be okay and that it won't be long, he doesn't understand and fights to get off the table. For a little boy, he is very strong and it usually takes a good 3 to 4 adults to hold him still. I am reluctantly one of those adults. It is not easy and Daniel does not help when he kicks and screams, but that part I am okay with. For it is actually when he stops putting up the fight and surrenders like a hunted animal caught in its prey that I feel the most sorrow. After a while he gives up and part of me (even though I know that it would hurt me physically) wants to scream at the top of my lungs: "Don't give up Daniel! Don't you ever give up the fight!"
Saturday, January 11, 2014
Life Sentence
Our daughter Alison is the best big sister that Daniel could ever ask for.
She is also a dreamer. Especially when it comes to Daniel. For many years she has dreamed about what Daniel will be like when he gets older. She has pondered who will marry him and wondered about his children. We have taken this in stride and plainly told her that Daniel may never get married or may never have children. This has never caused her to stop dreaming or wondering out loud.
When Jason gave Daniel a bath last night, he commented out loud the question of what are we going to do when Daniel gets too big for the bathtub. He keeps growing--they both do. Alison chimed in that Daniel could just take a shower with her. Daniel still cannot stand on his own and when he gets wet then he is double in difficulty to lift. We told Alison that taking a shower may not happen and she got quiet.
Do you know what it means for Alison to be quiet? We knew she was intently thinking about this. I pulled her over and wanted to gently remind her of what the specialist said just a few months ago...that there is a great possibility that Daniel may never walk. She went to her room. A few minutes later Jason called her back in and we explained (Jason did this well) that we will take care of Daniel until we (Jason and I) can no longer take care of him, and that it may mean putting him in a group home someday. At that Alison flat out told us that Daniel was NEVER going in a group home and that he would live with her no matter what! We told her that was a sweet thing to say, but not to forget that she may be married with her own children one day and that Daniel may be too much for her to handle. We explained that Daniel would not be far from her and that we would all visit him and love him no matter what.
Then she cried, and I saw it...I saw the realization in her eyes of the life sentence that Daniel's disability is. I cried too knowing that she knew what we all knew. She finally understood that Daniel is who he is and will not be the little brother she dreamed of having. I think on some level she always understood that, but she is a dreamer and she continued the dream for as long as she possibly could. Yet last night she woke up and to me, that is the saddest thing I have ever seen.
She is also a dreamer. Especially when it comes to Daniel. For many years she has dreamed about what Daniel will be like when he gets older. She has pondered who will marry him and wondered about his children. We have taken this in stride and plainly told her that Daniel may never get married or may never have children. This has never caused her to stop dreaming or wondering out loud.
When Jason gave Daniel a bath last night, he commented out loud the question of what are we going to do when Daniel gets too big for the bathtub. He keeps growing--they both do. Alison chimed in that Daniel could just take a shower with her. Daniel still cannot stand on his own and when he gets wet then he is double in difficulty to lift. We told Alison that taking a shower may not happen and she got quiet.
Do you know what it means for Alison to be quiet? We knew she was intently thinking about this. I pulled her over and wanted to gently remind her of what the specialist said just a few months ago...that there is a great possibility that Daniel may never walk. She went to her room. A few minutes later Jason called her back in and we explained (Jason did this well) that we will take care of Daniel until we (Jason and I) can no longer take care of him, and that it may mean putting him in a group home someday. At that Alison flat out told us that Daniel was NEVER going in a group home and that he would live with her no matter what! We told her that was a sweet thing to say, but not to forget that she may be married with her own children one day and that Daniel may be too much for her to handle. We explained that Daniel would not be far from her and that we would all visit him and love him no matter what.
Then she cried, and I saw it...I saw the realization in her eyes of the life sentence that Daniel's disability is. I cried too knowing that she knew what we all knew. She finally understood that Daniel is who he is and will not be the little brother she dreamed of having. I think on some level she always understood that, but she is a dreamer and she continued the dream for as long as she possibly could. Yet last night she woke up and to me, that is the saddest thing I have ever seen.
Subscribe to:
Posts (Atom)