Amazing, just amazing that one year went by and i could not find the time to write in here. I have amazing NEWS! Nelson is attending now a regular Pre-K, and he is doing awesome!!!!
We have done so much for the last year, along with the diet the ABA and the endless hours of play and pretend, we have learned that Nelson has a talent for Math, YES! Mathematics. He adores numbers and is incredible how much he can actually love them and crave to work with them.
He is currently doing 1st grade Math and keeps going forward, i can only imagine what it would be when he discovers that numbers are so much more and so fun.
I must say that i never really liked Math, i was very much afraid of it and never really confronted that fear. After re learning it with him, and looking at it on a different perspective, i realized that Math is so amazing and i understand now why someone who really understands it can enjoy it so much.
We are just elated to know that Nelson is going forward on his journey. He is doing great on the diet, in fact we ALL are.
Nannette is such a delight (our 3rd child) and she is growing beautifully, and no signs of Autism. That in itself is a wonderful gift.
I am sure not many people will read these lines, but here they are for the day that Nelson himself will read them.
Love Always Angela.
Thursday, August 26, 2010
Tuesday, August 18, 2009
Time goes by so fast!
Well i can not believe the last time i wrote was something like 4 months ago.
So many things have happened, some were great, some were very challenging for all of us.
Most of all i believe we are still learning how to live the every day live and capture the moments that are priceless.
I have been reading a lot, and Oh boy there is so much information out there, sometimes i am overwhelmed by the amount of information and how difficult is to filter some of it. Nevertheless,i keep informing myself and searching more avenues to help Nelson on his journey. Our Diet has been going really well. We are incorporating new recipes when ever we can and the children seam to be more receptive with change and introduction of new flavors.
Sometimes i find myself cooking all day long, and it seams that it never ends... the task of cooking could be daunting and evidently is one that we embraced as a must!
Nelson has gone a long way and he is finally entering the RCL school. Today was his frist day and my it was so difficult for me, but he did well.
I am so trill of this new beggining, and i have great expectations for this new beggining.
Nelson has been doing a lot of academic work during the summer, and he has progress tremendously. Our dear implementer Natalia sis an amazing job with him, and i have no words to express my gratitude to her...
Well, i guess i will try to write tomorrow, i am so tired i have been awake since 5 am today...
Thanks for reading if you are still there...
Love
Angela.
Friday, April 10, 2009
What we do not know.
It has been a while since I wrote last, and many thinks have happened in between.
Evidently we are like every day, trying to find new and improve ways to help Nelson. It is funny how things work sometimes, we read a lot my husband and I and we read and read trying to find new avenues for our adventure, trying to fill in the gap of complete ignorance about Nelsons limitations and what we can really learn about it; most of the time I found myself acting upon instinct, called mother instinct or just plain and simple old instinct. Sometimes it feels like I am onto something, like a retriever dog pointing at a duck lying on the grass so his master can get it. There are mornings that I feel like I have the mental clarity to tackle almost anything that is been throw at me, and there are days, that I feel like a bus run me over. Either way I need to keep going forward and keep close details of all the implementations that we are applying.
Nelson started school last year one day after his b-day; he attends 5 days a week and goes from 8:00am to 1:50pm. The school is provided and funded by the state and the school district. Nelson has 8 classmates and only one of them is a girl. They are all different ages from 3 to 5 and they all evidently have one thing in common: their limitations.
School is one of those places that I always wanted to delay on my children, I always said: oh, no I will wait till they are 5 and I will keep them home. Well, I was wrong, school prior to formal school (kindergarten) is not only important but wonderful, it fills in the places that me as a mother cannot for many reasons and it enables my kids to play and learn about the diversity of the world. Nevertheless I was hesitant about Nelson going to school for so long and so sudden, since he never went to a day care. In t he very beginning I was panicking and I could not bare the fact that he will come home and I was completely unable to ask how did it go? Did you have fun? Do you like it? All those questions that you want to ask… anyhow he went, and we accommodate (I should say I) to whatever needed to be done.
Each morning I will have this sensation of distress that I could not really place anywhere, but I knew it was always related to him being away from home at school. Yes! You may call me possessive and obsessive and controlling, Yes! I admit it! But clearly beyond that point, I knew deep down that something was out of place and I needed to find out.
Evidently life got on t he way and I delayed my observation of the classroom for a while, finally one day I requested it and went I got there and observed my son`s classroom for one hour I left the observation room crying. I am not sure I was sad, but I am sure I was mad, I was enraged, I was fuming, I was completely down to my knees…
All my fears where confirm and all that sensation of distress got a name and a meaning: the classroom was out of control, and the needs of my child (and the others) were no meet by any stretch of the imagination.
You probably still think I am crazy, yet, I am not.
I went home and took a deep breath, and I started a crusade to get Nelson a chance to get the education that he needs and deserves.
I encounter no eco on the school and its representatives, on the contrary: I got lots of procedural codes, procedures that need to be follow, and a bunch of bureaucracy that if follows it will be too late for all the children in that classroom. Therefore we needed to take action: but what now? So back to the drawing table and not without a pair of problems to solve: Nelson`s tonsils became really enlarge about 2 months ago, no symptoms, no apparent illness, and then boom! He was sick, very much sick. None of his Dr`s could really do anything and we where cornered with the decision of giving him antibiotics, the very same thing that makes him toxic. !
So, in hand 2 mayor situations: a) Nelson`s diet will have to start from the beginning after 20 weeks on it, and b) he needed a place better than school. And when I say better I mean WAY better. In order to recover and in order to keep going forward.
For spring break we all got sick, and hence we stayed home, and cabin fever did what it pleased… I gave us an excuse to read more and research more and with more intensity. During those sleepless nights I contemplated all the possible scenarios and all the mayor implications and concluded that no matter the path to be walked, we needed to duplicate or triplicate our income… but why? And How?
Why: because the measures to be taken implied private therapies, and they are not covered by the insurance.
How: well, we are still working on that one… (my husband buys the lottery once a week just in case)
The honest truth is that no matter how hard is the reality that we are immerse into, we need to keep going forward and in doing so, we will find the answers that we need and why not the help we need to provide our beloved son Nelson with the best chance possible for a recovery.
We are still cooking and roasting pork every week, and we will keep on doing so because we believe in what we do and we know recovery is in the future.
(Yeap, and how about the day I do not feel so positive!) well yes, those are among us to, not only on me but on us as a family… they are peculiar and definitely filled with fear and uncertainty, and they usually happened at night, when I can close my eyes in the darkness and cry internal tears that are also mute so my children do not hear me. Yes, there are days that are less than good, and closer to really bad, where I feel like I am about to pass out… and then it always happens: I see my son`s face looking at me, talking, and asking me about my day, and telling me about his… then I stop on my tracks and I aim towards that sentiment that uncertain future that awaits us and even thought we do not know what it is, I love to dream that is going to be just like that!
Evidently we are like every day, trying to find new and improve ways to help Nelson. It is funny how things work sometimes, we read a lot my husband and I and we read and read trying to find new avenues for our adventure, trying to fill in the gap of complete ignorance about Nelsons limitations and what we can really learn about it; most of the time I found myself acting upon instinct, called mother instinct or just plain and simple old instinct. Sometimes it feels like I am onto something, like a retriever dog pointing at a duck lying on the grass so his master can get it. There are mornings that I feel like I have the mental clarity to tackle almost anything that is been throw at me, and there are days, that I feel like a bus run me over. Either way I need to keep going forward and keep close details of all the implementations that we are applying.
Nelson started school last year one day after his b-day; he attends 5 days a week and goes from 8:00am to 1:50pm. The school is provided and funded by the state and the school district. Nelson has 8 classmates and only one of them is a girl. They are all different ages from 3 to 5 and they all evidently have one thing in common: their limitations.
School is one of those places that I always wanted to delay on my children, I always said: oh, no I will wait till they are 5 and I will keep them home. Well, I was wrong, school prior to formal school (kindergarten) is not only important but wonderful, it fills in the places that me as a mother cannot for many reasons and it enables my kids to play and learn about the diversity of the world. Nevertheless I was hesitant about Nelson going to school for so long and so sudden, since he never went to a day care. In t he very beginning I was panicking and I could not bare the fact that he will come home and I was completely unable to ask how did it go? Did you have fun? Do you like it? All those questions that you want to ask… anyhow he went, and we accommodate (I should say I) to whatever needed to be done.
Each morning I will have this sensation of distress that I could not really place anywhere, but I knew it was always related to him being away from home at school. Yes! You may call me possessive and obsessive and controlling, Yes! I admit it! But clearly beyond that point, I knew deep down that something was out of place and I needed to find out.
Evidently life got on t he way and I delayed my observation of the classroom for a while, finally one day I requested it and went I got there and observed my son`s classroom for one hour I left the observation room crying. I am not sure I was sad, but I am sure I was mad, I was enraged, I was fuming, I was completely down to my knees…
All my fears where confirm and all that sensation of distress got a name and a meaning: the classroom was out of control, and the needs of my child (and the others) were no meet by any stretch of the imagination.
You probably still think I am crazy, yet, I am not.
I went home and took a deep breath, and I started a crusade to get Nelson a chance to get the education that he needs and deserves.
I encounter no eco on the school and its representatives, on the contrary: I got lots of procedural codes, procedures that need to be follow, and a bunch of bureaucracy that if follows it will be too late for all the children in that classroom. Therefore we needed to take action: but what now? So back to the drawing table and not without a pair of problems to solve: Nelson`s tonsils became really enlarge about 2 months ago, no symptoms, no apparent illness, and then boom! He was sick, very much sick. None of his Dr`s could really do anything and we where cornered with the decision of giving him antibiotics, the very same thing that makes him toxic. !
So, in hand 2 mayor situations: a) Nelson`s diet will have to start from the beginning after 20 weeks on it, and b) he needed a place better than school. And when I say better I mean WAY better. In order to recover and in order to keep going forward.
For spring break we all got sick, and hence we stayed home, and cabin fever did what it pleased… I gave us an excuse to read more and research more and with more intensity. During those sleepless nights I contemplated all the possible scenarios and all the mayor implications and concluded that no matter the path to be walked, we needed to duplicate or triplicate our income… but why? And How?
Why: because the measures to be taken implied private therapies, and they are not covered by the insurance.
How: well, we are still working on that one… (my husband buys the lottery once a week just in case)
The honest truth is that no matter how hard is the reality that we are immerse into, we need to keep going forward and in doing so, we will find the answers that we need and why not the help we need to provide our beloved son Nelson with the best chance possible for a recovery.
We are still cooking and roasting pork every week, and we will keep on doing so because we believe in what we do and we know recovery is in the future.
(Yeap, and how about the day I do not feel so positive!) well yes, those are among us to, not only on me but on us as a family… they are peculiar and definitely filled with fear and uncertainty, and they usually happened at night, when I can close my eyes in the darkness and cry internal tears that are also mute so my children do not hear me. Yes, there are days that are less than good, and closer to really bad, where I feel like I am about to pass out… and then it always happens: I see my son`s face looking at me, talking, and asking me about my day, and telling me about his… then I stop on my tracks and I aim towards that sentiment that uncertain future that awaits us and even thought we do not know what it is, I love to dream that is going to be just like that!
Wednesday, January 28, 2009
Coming back !
It has been quite a while since I wrote here. Lots of things had happened and so many new discoveries.
We all have been through a lot of changes and all of them point to great new horizons.
The most significant event was getting sick all at the same time. We were like the ER of a hospital; it was so depressing and so sad. Nelson had it bad and his fever went up to a 103… needless to say we gave him no medicine and keep him under observation closely and monitoring his fever, appetite and his mood. He literally shut himself down to sleep mode, he slept so much and in such a fever that sometimes I got really scared: I wondered: I am doing the right thing? Should I just give him the antibiotics and get done with it? Should I stick to the program and the beliefs of our new doctor? Is this going to get worse? Can it actually get worse?. If he was not sleeping he was super needy and he only wanted me, a mami so sick that can hardly carry him around. He could not cope very well with his frustration and if he felt an ounce of what I felt, he was feeling pretty miserable. I was able to complaint; he was not, at least not verbally.
He did not eat that much and he drank just enough to keep himself hydrated… once the fever went away and his nasal discharge and cough disappear, he literally came back from the ashes like the Fenix bird and started to leap into new levels of communication. He said so many things and talked to us in sentences of 5 words and sometimes even more. He used them correctly and in the correct context, I was just in astonishment of what was happening and could not get enough of him being so talkative.
Since then he has been talking so much more and not only that he is been transitioning from activity to the next with less frustration and he is able to follow command more accurately. Evidently the Dr`s tent to say that is just my wishful thinking and my mother eyes that make all this assumptions and that in reality he might not be there were I keep telling them that he is, yet I believe that he is definitely leap into a new way of understanding and that what we are doing with the food is lifting that veil of confusion and the cloud that makes his condition what it is. His brain is getting cured and his Gut lining is getting cured, that i know for sure. I know I am not a Dr and I have no degree in Medicine or anything like that, but I know my son and I can see the changes and the progress. I have my own method of keeping track of his progress, I have my own rudimentary charts and notes that enable me to translate them into statistics, and from there I can see his progress in a mathematical (quantitative) way. Science evidently has their own scientific method and ways to measure progress and evidently is not the same I am doing here, yet every case is different and I apply what I know to my son`s progress.
I try to keep myself objective in all the process and remember that every little leap is a huge one for him, I cannot compare him with other kids in his condition or even with mainstream kids, I just measure what I see in him as progress and go from there.
The cooking has also evolve and grow into a well oiled machine. I can cook so many meals and so many new things that sometimes I am amazed of all the things I can do in 30 minutes or so. I have concluded that planning is the key element in cooking and definitely the people that get to see me almost every day is the people from the grocery store. Hehehehe I should get me a sleeping bag and sleep there…
Social Life? Not so much almost none, evidently going out to a party or to a restaurant is a lot of work and more importantly: situations I am not ready to tackle just yet, specifically because of the food that they (and us) cannot have. I do not mind to cook in advance to go out as a family, yet is another thing to cook and go out to a b-day party or so, where others will be enjoying all the food we cannot have and Nelson and Marie will be requesting to have those, and the answer will be no, and then he will have a super meltdown and then we will be responsible for ruin and spoiling the fun for everyone else, and then the snow ball effect will take place and things will get probably uncomfortable for us and others. We definitely do not want to spoil anybodies happiness especially on their b-day.
I guess I will find a way to make it work and we will socialize again. I keep thinking that is a great excuse for people to come to us an visit, yet it does not seem to be happening at all, I suppose people just find all this a little bit “too much” to handle.
Nevertheless the discoveries and the amount of time we spend together as a family is making a difference too and even though we do not have play dates or b-day parties or a busy social life, we are healing and learning about Nelson and keeping him company in his journey. Is a long road ahead so we are just getting comfortable in our seats.
We all have been through a lot of changes and all of them point to great new horizons.
The most significant event was getting sick all at the same time. We were like the ER of a hospital; it was so depressing and so sad. Nelson had it bad and his fever went up to a 103… needless to say we gave him no medicine and keep him under observation closely and monitoring his fever, appetite and his mood. He literally shut himself down to sleep mode, he slept so much and in such a fever that sometimes I got really scared: I wondered: I am doing the right thing? Should I just give him the antibiotics and get done with it? Should I stick to the program and the beliefs of our new doctor? Is this going to get worse? Can it actually get worse?. If he was not sleeping he was super needy and he only wanted me, a mami so sick that can hardly carry him around. He could not cope very well with his frustration and if he felt an ounce of what I felt, he was feeling pretty miserable. I was able to complaint; he was not, at least not verbally.
He did not eat that much and he drank just enough to keep himself hydrated… once the fever went away and his nasal discharge and cough disappear, he literally came back from the ashes like the Fenix bird and started to leap into new levels of communication. He said so many things and talked to us in sentences of 5 words and sometimes even more. He used them correctly and in the correct context, I was just in astonishment of what was happening and could not get enough of him being so talkative.
Since then he has been talking so much more and not only that he is been transitioning from activity to the next with less frustration and he is able to follow command more accurately. Evidently the Dr`s tent to say that is just my wishful thinking and my mother eyes that make all this assumptions and that in reality he might not be there were I keep telling them that he is, yet I believe that he is definitely leap into a new way of understanding and that what we are doing with the food is lifting that veil of confusion and the cloud that makes his condition what it is. His brain is getting cured and his Gut lining is getting cured, that i know for sure. I know I am not a Dr and I have no degree in Medicine or anything like that, but I know my son and I can see the changes and the progress. I have my own method of keeping track of his progress, I have my own rudimentary charts and notes that enable me to translate them into statistics, and from there I can see his progress in a mathematical (quantitative) way. Science evidently has their own scientific method and ways to measure progress and evidently is not the same I am doing here, yet every case is different and I apply what I know to my son`s progress.
I try to keep myself objective in all the process and remember that every little leap is a huge one for him, I cannot compare him with other kids in his condition or even with mainstream kids, I just measure what I see in him as progress and go from there.
The cooking has also evolve and grow into a well oiled machine. I can cook so many meals and so many new things that sometimes I am amazed of all the things I can do in 30 minutes or so. I have concluded that planning is the key element in cooking and definitely the people that get to see me almost every day is the people from the grocery store. Hehehehe I should get me a sleeping bag and sleep there…
Social Life? Not so much almost none, evidently going out to a party or to a restaurant is a lot of work and more importantly: situations I am not ready to tackle just yet, specifically because of the food that they (and us) cannot have. I do not mind to cook in advance to go out as a family, yet is another thing to cook and go out to a b-day party or so, where others will be enjoying all the food we cannot have and Nelson and Marie will be requesting to have those, and the answer will be no, and then he will have a super meltdown and then we will be responsible for ruin and spoiling the fun for everyone else, and then the snow ball effect will take place and things will get probably uncomfortable for us and others. We definitely do not want to spoil anybodies happiness especially on their b-day.
I guess I will find a way to make it work and we will socialize again. I keep thinking that is a great excuse for people to come to us an visit, yet it does not seem to be happening at all, I suppose people just find all this a little bit “too much” to handle.
Nevertheless the discoveries and the amount of time we spend together as a family is making a difference too and even though we do not have play dates or b-day parties or a busy social life, we are healing and learning about Nelson and keeping him company in his journey. Is a long road ahead so we are just getting comfortable in our seats.
Sunday, January 4, 2009
A New Year a New Challenge!
It has been a while, i have been so busy cooking and trying to organize all in a way that things do not fall apart. The holidays where nostalgic, maybe because of what can not be just yet! Nevertheless we celebrate and enjoy lots of time as a family, more than ever we are together like a pack of dogs were one goes the others follow. We have learn so much of what we need to do with Nelson and in this learning process we have also learn what we can not afford to do just yet. I wish we could find the right equilibrium that could keep us all afloat!
I will write more this week now the children will go back to school... i am wondering how that will go!
Love
Angela.
I will write more this week now the children will go back to school... i am wondering how that will go!
Love
Angela.
Monday, December 22, 2008
1st Christmas
This will be our 1st Christmas after Nelson`s diagnose; Is going to be filled with lots of mixed feelings and lots of wishes for the New Year to come. Personally I have only one wish to ask to God: Please give us the strength and the guidance we need, to go where is needed to help Nelson. If I have an idea of where I am going I could accomplish so much more!
I want to wish a Merry Christmas to all the families that are just like us, and tell them that where there is a will there is way.
Love Angela.
Wednesday, December 17, 2008
The Holiday Season
Nelson craves structure in his life, and everything he does pretty much needs to be structured. His days at school are just like that, and when he comes home he gets a chunk of structure too. Evidently the holiday season present itself as the complete opposite, a moments for the kids to be kids and to be completely spontaneous about what we do every day and why not a way to escape all the rigidity of our lives filled with responsibilities and work that needs to be done to keep him where he needs to be.
Even though I love structure (and those who know me well know is true), sometimes is overwhelming. I guess we all parents of a child with special needs and mainstream ones go through that at least once every now and then. The good news about it is that everything you do for your child will come back to you in the form of reward, such as the happy feelings when you see him/her eating the right foods, or when he uses more words to communicate, or even when he comes home from school and gives you a kiss. I guess all those little things are not taken for granted any more.
So for this holiday season I guess the structure will have to prevail, and even more cooking will have to be done. This weekend I cooked a lot, and I felt like I was all day at the kitchen, yet it was nice to see how the kids ate their meals (after some faces of disgust hehehehe) and they end up the day with a smile.
Ohhh I got the new probiotic 2 days ago, is definitely more drinkable and they have been drinking it for 2 days now. I have to be there and ask them 100 times to drink, yet they drink so that is good. I am now using a new technique with Nelson so he drinks the liquid with his probiotic: I take I piece of my delicious homemade cake, or cookie, and I place it on his hand, and then I say please drink, he will say to me 1st drink then cookie/cake, and I will say yes, he will drink a few sips, and then he will have some cake/cookie, I do this 4 to 6 times and his drink is gone, if he does not want to drink, I take the cake/cookie from his hand and I say: bye bye cake/cookie, and immediately I say that he looks at me and says: I want a drink!
Yes! I know is a lot of work, but it needs to be done and it will work I know, something tells me that it will. We have the Christmas tree up and the Nativity set right beside the tree, it looks so nice and warm… I guess this Christmas is going to be a melancholic one, yet full with great cooks and the smell of home bake goods all day long!
Even though I love structure (and those who know me well know is true), sometimes is overwhelming. I guess we all parents of a child with special needs and mainstream ones go through that at least once every now and then. The good news about it is that everything you do for your child will come back to you in the form of reward, such as the happy feelings when you see him/her eating the right foods, or when he uses more words to communicate, or even when he comes home from school and gives you a kiss. I guess all those little things are not taken for granted any more.
So for this holiday season I guess the structure will have to prevail, and even more cooking will have to be done. This weekend I cooked a lot, and I felt like I was all day at the kitchen, yet it was nice to see how the kids ate their meals (after some faces of disgust hehehehe) and they end up the day with a smile.
Ohhh I got the new probiotic 2 days ago, is definitely more drinkable and they have been drinking it for 2 days now. I have to be there and ask them 100 times to drink, yet they drink so that is good. I am now using a new technique with Nelson so he drinks the liquid with his probiotic: I take I piece of my delicious homemade cake, or cookie, and I place it on his hand, and then I say please drink, he will say to me 1st drink then cookie/cake, and I will say yes, he will drink a few sips, and then he will have some cake/cookie, I do this 4 to 6 times and his drink is gone, if he does not want to drink, I take the cake/cookie from his hand and I say: bye bye cake/cookie, and immediately I say that he looks at me and says: I want a drink!
Yes! I know is a lot of work, but it needs to be done and it will work I know, something tells me that it will. We have the Christmas tree up and the Nativity set right beside the tree, it looks so nice and warm… I guess this Christmas is going to be a melancholic one, yet full with great cooks and the smell of home bake goods all day long!
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