Daniel's last day of summer school was today and by all accounts he had a great time! He thoroughly enjoyed school and even loved riding on the bus. He came home some days with paint somewhere on his body, but every day with a smile on his face. It was a delight to see.
Today, for the last day of summer school, there was a Luau (even though it rained). Daniel and his classmates sat on the cafeteria floor in their swimsuits and swim trunks and listened to music. I got a chance to see some of Daniel's classmates and the family members as well.
Some of Daniel's classmates are clearly in need of more care then Daniel. Some require wheelchairs, tube feedings and oxygen. Through it all though, the parents/caregivers are smiling, happy and take it all in stride. I look at them and wonder if I could do that. Could I take care of a child with such special needs?
To me, Daniel is a far cry from these children as far as his needs are concerned. Daniel does not need oxygen or to be fed from a tube and he is not in a wheelchair. But I do understand how these parents do it. I can totally see myself looking at any one of those children if they were mine and saying "at least he/she is not..." I get that. I get that each and every thing is looked upon as lucky it isn't worse. Because, yes it could be far far worse. And even though those other children appear to be worse off than Daniel, they are all really lucky.
Daniel's teacher told me that there would be a new 4th grader attending school in the fall. He had a motor vehicle crash in March. I looked this up online and this little boy was flown from his vehicle onto the interstate. No seat belt. This boy--very lucky.
Friday, July 17, 2009
Friday, July 10, 2009
Done Differently
Jason won a trip to visit Pixar studios in Emmeryville, CA a while back.
While this was very exciting, we were at first very cautious in admitting to the prize. It meant two full nights away from our children.
We were mostly concerned about Daniel.
It is very easy to let Alison stay with her grandma and papa but Daniel had never done this before nor had grandma and papa watched both kids overnight and for more than one night. We had our concerns.
None of it had to do with my parents capability, it was our own hangups that made us hesitate.
So, Jason took a plunge and asked the travel agent who would be booking the trip if we could bring the kids along too. They said yes.
Then we thought, 'well how often do we get a free flight for all four of us to the West Coast, let's make it our vacation.'
The prospect of a real family vacation excited us. We were hesitant but asked about the idea of extending the trip to a full week. They said yes.
We thought they said yes and they were going to pay for the whole week. However, reading the fine print we found out we were wrong. So, knowing that we could never afford the hotel room in San Fran for the remainder of the week, we looked into visiting family that live in Oregon and Washington.
We made plans, albeit very unmanageable plans to drive up (taking nearly 2 days) and visit a cousin of mine, an uncle of Jason's and my brother and sister-in-law. Then we were going to fly back from Seattle in the early morning of our original flight home date and catch the flight from San Fran to Wash/DC and then drive the 2.5 hours home that night.
It started to feel less and less like a relaxing vacation and we both just couldn't fathom having to lug all our stuff, two kids and ourselves all the way across the country and not stay put.
We looked for ways to make it better. We had tremendous monetary help from both my parents and brother for the added flight and an added stay at a hotel midway on our drive up the coast. Also, there was the expense of a rental car and the added cost of dropping it off at a different airport. Or we could fly up to Seattle from San Fran, again costing an arm and a leg. But the main part that we couldn't get past was the thought of all the traveling and the traveling with children.
So, less than one week before our planned "vacation," we called it off and let down ourselves, our family and our friends.
Last night I asked Jason if we would have done it differently if Daniel was not disabled. He said the answer I was thinking-yes. We would have. We would have just done the trip as is, the two of us going away for two nights and left the kids with my parents. If Daniel could walk and talk as any other normal 2 and a half year old can, we would have felt more comfortable with leaving them for two nights. He would have understood what we were doing had we explained it to him.
It has also been bugging me, would we have done it differently--what we had planned--if Daniel wasn't disabled? Would we have felt more at ease with doing our trip as planned with the driving and the flying? Maybe, I cannot say for sure. I am pretty sure that traveling with two kids ages 6 and 2.5 would be difficult no matter what. I know that traveling with just one child on a plane is difficult and not even across the country so I don't believe that it would be any easier despite him not being disabled but what if?
My biggest fear is that I let Daniel down. I fear I did not give him enough credit nor did I give Alison or my parents enough credit. I did not have faith. Faith that we could leave Daniel and both kids with their grandparents for two nights, faith that had we gone through with it that our kids could have handled it with all the grace that comes with traveling that long. Faith that I myself could have dealt with it despite my own anxiety about flying. I let them all down and for that I own everyone a huge apology but to Daniel I owe more, I owe him my confidence.
While this was very exciting, we were at first very cautious in admitting to the prize. It meant two full nights away from our children.
We were mostly concerned about Daniel.
It is very easy to let Alison stay with her grandma and papa but Daniel had never done this before nor had grandma and papa watched both kids overnight and for more than one night. We had our concerns.
None of it had to do with my parents capability, it was our own hangups that made us hesitate.
So, Jason took a plunge and asked the travel agent who would be booking the trip if we could bring the kids along too. They said yes.
Then we thought, 'well how often do we get a free flight for all four of us to the West Coast, let's make it our vacation.'
The prospect of a real family vacation excited us. We were hesitant but asked about the idea of extending the trip to a full week. They said yes.
We thought they said yes and they were going to pay for the whole week. However, reading the fine print we found out we were wrong. So, knowing that we could never afford the hotel room in San Fran for the remainder of the week, we looked into visiting family that live in Oregon and Washington.
We made plans, albeit very unmanageable plans to drive up (taking nearly 2 days) and visit a cousin of mine, an uncle of Jason's and my brother and sister-in-law. Then we were going to fly back from Seattle in the early morning of our original flight home date and catch the flight from San Fran to Wash/DC and then drive the 2.5 hours home that night.
It started to feel less and less like a relaxing vacation and we both just couldn't fathom having to lug all our stuff, two kids and ourselves all the way across the country and not stay put.
We looked for ways to make it better. We had tremendous monetary help from both my parents and brother for the added flight and an added stay at a hotel midway on our drive up the coast. Also, there was the expense of a rental car and the added cost of dropping it off at a different airport. Or we could fly up to Seattle from San Fran, again costing an arm and a leg. But the main part that we couldn't get past was the thought of all the traveling and the traveling with children.
So, less than one week before our planned "vacation," we called it off and let down ourselves, our family and our friends.
Last night I asked Jason if we would have done it differently if Daniel was not disabled. He said the answer I was thinking-yes. We would have. We would have just done the trip as is, the two of us going away for two nights and left the kids with my parents. If Daniel could walk and talk as any other normal 2 and a half year old can, we would have felt more comfortable with leaving them for two nights. He would have understood what we were doing had we explained it to him.
It has also been bugging me, would we have done it differently--what we had planned--if Daniel wasn't disabled? Would we have felt more at ease with doing our trip as planned with the driving and the flying? Maybe, I cannot say for sure. I am pretty sure that traveling with two kids ages 6 and 2.5 would be difficult no matter what. I know that traveling with just one child on a plane is difficult and not even across the country so I don't believe that it would be any easier despite him not being disabled but what if?
My biggest fear is that I let Daniel down. I fear I did not give him enough credit nor did I give Alison or my parents enough credit. I did not have faith. Faith that we could leave Daniel and both kids with their grandparents for two nights, faith that had we gone through with it that our kids could have handled it with all the grace that comes with traveling that long. Faith that I myself could have dealt with it despite my own anxiety about flying. I let them all down and for that I own everyone a huge apology but to Daniel I owe more, I owe him my confidence.
Tuesday, June 9, 2009
Standing up for himself
Daniel has been movin and shakin for the past few weeks now and it is so fun and exciting to see. He out grew his high chair and with the continued generosity of grandma and papa he got a brand new chair that will grow with him. This chair allows him to sit at the table with us and eat.
However, this has become a bit difficult with his reaching for everything in sight. We have had to make sure the path is clear before we set him at the table. And you can see from the series of pictures below, that there is something else we need to contend with:
However, this has become a bit difficult with his reaching for everything in sight. We have had to make sure the path is clear before we set him at the table. And you can see from the series of pictures below, that there is something else we need to contend with:
Wednesday, May 20, 2009
Trouble
It has been busy around here for the last few days especially. Daniel is becoming a typical two year old and this has been both exciting and dangerous.
Daniel, for a long time, really didn't find much interest in exploring the world around him. He would be perfectly fine sitting still and sort of "playing" with things that were presented to him. But no more!
Daniel is now a very inquisitive toddler, wanting to go wherever you are and see whatever it is you are doing. He is finding out that the kitchen is a pretty cool place with one particular cabinet that has different bottles of interesting looking fluid. Another fun place is in the hall upstairs very close to the stairs going down! Even more interesting is in the playroom where he can almost pull an entire shelving unit upon himself! Or maybe the best part is in the laundry room? Really all of it is just great fun for him and for us too.
Even though this has come upon us being fully unprepared, it is very exciting to have this little 2 year old in our house. It has been a while (not since Alison was two) that we've had to keep a diligent eye on a child's exploration. Yes, we need to invest in some child proofing but really I don't care about that right now. All I care about is that my little boy is becoming Trouble with a capital "T" and that is just alright with me.
Daniel, for a long time, really didn't find much interest in exploring the world around him. He would be perfectly fine sitting still and sort of "playing" with things that were presented to him. But no more!
Daniel is now a very inquisitive toddler, wanting to go wherever you are and see whatever it is you are doing. He is finding out that the kitchen is a pretty cool place with one particular cabinet that has different bottles of interesting looking fluid. Another fun place is in the hall upstairs very close to the stairs going down! Even more interesting is in the playroom where he can almost pull an entire shelving unit upon himself! Or maybe the best part is in the laundry room? Really all of it is just great fun for him and for us too.
Even though this has come upon us being fully unprepared, it is very exciting to have this little 2 year old in our house. It has been a while (not since Alison was two) that we've had to keep a diligent eye on a child's exploration. Yes, we need to invest in some child proofing but really I don't care about that right now. All I care about is that my little boy is becoming Trouble with a capital "T" and that is just alright with me.
Monday, May 11, 2009
Mother Calling
I have read on other blogs and in some articles, where mothers of special needs children have a much more difficult job. That for some reason we are stronger than a mother of a "normal" child. I have both and I tend to disagree.
I think that any mother is a mother of a "special needs" child. What child out there doesn't have "special needs?"
In today's world, there is so much that a child needs to survive that any mother who can guide her child though it with very little harm done, is a good mother.
When I was pregnant with Alison, the Iraq war started. I remember thinking that it was going to be very difficult to raise her in this world today. She has so many obstacles to overcome. Daniel does too but in a way, hers are even more dangerous because I cannot predict them. With Daniel, I sorta know what is ahead of me. He has his needs and delays and I know what we need to do to tackle them. For Alison, her needs are not so transparent. Her difficulties lie in the day to day navigation of this world which some days, I can't even navigate. I don't know how to shield her, protect her, guide her through and I haven't yet met one mother who really does.
Special needs or not, it is all a hard part of motherhood. For my children to be successful in life (and I don't mean make a lot of money or be famous), for any child to be successful, they must have a mother who is loving, and caring unconditionally. That is the task of any mother. That is the task of every mother.
I think that any mother is a mother of a "special needs" child. What child out there doesn't have "special needs?"
In today's world, there is so much that a child needs to survive that any mother who can guide her child though it with very little harm done, is a good mother.
When I was pregnant with Alison, the Iraq war started. I remember thinking that it was going to be very difficult to raise her in this world today. She has so many obstacles to overcome. Daniel does too but in a way, hers are even more dangerous because I cannot predict them. With Daniel, I sorta know what is ahead of me. He has his needs and delays and I know what we need to do to tackle them. For Alison, her needs are not so transparent. Her difficulties lie in the day to day navigation of this world which some days, I can't even navigate. I don't know how to shield her, protect her, guide her through and I haven't yet met one mother who really does.
Special needs or not, it is all a hard part of motherhood. For my children to be successful in life (and I don't mean make a lot of money or be famous), for any child to be successful, they must have a mother who is loving, and caring unconditionally. That is the task of any mother. That is the task of every mother.
Monday, May 4, 2009
Daniel's classroom
Today, Lara and I visited the elementary-school classroom where Daniel will attend summer camp for a few weeks and, in the fall, be enrolled as a preschooler.
While I had anticipated feeling uneasy about the visit, I actually became very excited by what I saw. We sat in on circle time, where the teacher led the class in songs and reading and used lots of visual aids -- really not much different from what we've observed in Alison's preschool classrooms.
What was different, of course, were the kids. Some had mobility issues, some behavioral or communicative. But there was no mistaking that these children were happy, responsive and having a great time. I immediately visualized my boy alongside his classmates, pointing to pictures, talking to the teacher, trying his sign language and "rocking out." (See 'Daniel dances' post.)
While I fully expect him to be apprehensive at first, I know that before long Daniel will be having a great time in his new class. And I am confident that he will excel from being in this new and wonderful environment.
Thursday, April 30, 2009
Truth, Reality
I know in my heart of hearts that it is unfair to compare Daniel to other children his age. However, when faced this past weekend with two little boys slightly younger than Daniel-walking, talking perfectly normal little boys, I cannot help but to compare.
I still go back to the why of it all. Why Daniel? I cannot make sense of it, and I don't think that I ever will.
I love Daniel with all my being but the reality is that that love will never change his differences. I wish it could. I wish that someone could just love someone so much that all of that person's difficulties would go away because I can't move mountains, I can't change it and I can't control it either and that is what bothers me the most.
The other day I visited Daniel's soon to be special ed classroom. It was a truly surreal situation for me. Here I saw children that seemed to me to be far worse than Daniel, but in reality, some were very much like him. I fully expected someone official to come walking in to the classroom and tell me that a mistake had been made and that my son actually belonged in the regular classroom, but that was just a wish on my part.
I know full well that Daniel will do great in this class. I know he will love it and that it will be the best thing for him but in truth I still wish it weren't so.
I still go back to the why of it all. Why Daniel? I cannot make sense of it, and I don't think that I ever will.
I love Daniel with all my being but the reality is that that love will never change his differences. I wish it could. I wish that someone could just love someone so much that all of that person's difficulties would go away because I can't move mountains, I can't change it and I can't control it either and that is what bothers me the most.
The other day I visited Daniel's soon to be special ed classroom. It was a truly surreal situation for me. Here I saw children that seemed to me to be far worse than Daniel, but in reality, some were very much like him. I fully expected someone official to come walking in to the classroom and tell me that a mistake had been made and that my son actually belonged in the regular classroom, but that was just a wish on my part.
I know full well that Daniel will do great in this class. I know he will love it and that it will be the best thing for him but in truth I still wish it weren't so.
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