Last month my son turned 5. It was like any and every other birthday. We were excited and happy for him. My heart was filled with so much love and joy watching him beam as he greeted his birthday guests. He absolutely enjoyed basking in the glow of 5 candles on his dinosaur birthday cake as everyone sang happy birthday to him. It was a great birthday full of happiness and fun.
Also like every year, he goes for his well check up. This year was no different. Each year my emotions are like a roller coaster at this time. While I enjoyed his birthday party, my nerves are equally strained at his well check up because I know that he will be required to have blood drain to check his thyroid levels, allergies (specifically celiac disease) and this year to check his hormone levels. I knew this was coming, I had spoken to his pediatrician about it before but the reality of it was just not easy.
Although my son had grown some, he was still not growing enough and now we have to consider whether or not hormone therapy is something we want to try. We will see a specialist once the doctor reviews the blood work. Of course, I do not think there are any guarantees on anything and I do not know enough information about any of this to make a educated decision, but the fact that there is conversation about it now is still kind of depressing. I was really hoping that my son had grown enough so that we would not have to have this discussion at all but obviously that is not the case.
Additionally, going with my son to get his blood drawn was horrible. As soon as we walked into the clinic he knew he was going to have something done to him. So of course he reacted as any little boy would. He started crying. This, I would have probably been able to handle. But his crying was also accompanied by "No mommy, not me." "Don't want to." "Go home." or some variation of those phrases repeated over and over during the entire time we were waiting. It was all I could do to hold back my tears and not fall to pieces. I am just thankful that we only have to do this once a year. I do not think I could handle it if we had to do this several times a year. Not fun. I'm pretty sure I was emotionally drained and exhausted for the rest of the week as a result of this half hour.
In the meantime, we are waiting to hear back from our pediatrician and what steps we need to take next. I am sure there will be more doctor visits in our future.
Sunday, October 27, 2013
Tuesday, September 3, 2013
Potty training - and it continues
I had to look back on my blog to see when I first posted about potty training. April 1st was the date. We are now on September 2, so its been four months since I started potty training my son. I am happy to say we have made some progress. My son is not completely potty trained but he is a lot closer now than he was four months ago.
My son now knows how to pee in a potty. He also knows how to sit down in the potty at such an angle so that when he pees urine does not spray all over the bathroom floor and anyone (me) who might be in the vicinity. He is also less likely to have an accident, thereby soaking his training underwear, pants, and anything else that he may be sitting on. I learned the hard way to make sure that when he is in his training underwear he is sitting on a towel. In the beginning, I was saved by the towel more times than I can count!
I was also helped in the potty training process by our awesome habilitation therapist who unfortunately is no longer with us. When she was with us, the first thing she would do is come in and set the timer and put my son on the potty. Every twenty minutes during the days that she came to our house he was on the potty. He hated it but it made a difference.
He is also making progress with sitting on the potty and actually using the potty at school. With the help of aides, he sits on the little kids potty and goes to the bathroom. I am not sure how often he is doing this but I believe it is becoming more of a regular routine on his part and he definitely has less resistance to the aides than he does to me.
But, with all the steps forward we are still a couple of steps shy of completing the potty training process. My son still argues, runs away, fights, struggles with me every time I tell him he has to go on the potty. His first response is always "don't have to" followed by "NO POTTY!" I only make him sit on the potty every couple of hours when we are at home so I know he will have to do something. Of course, once he sits down he usually pees. It would be nice for my son to acknowledge (at least once) that yes, he has to go on the potty. This leads to the other problem that we are still facing; my son still will not tell us when he has to go to the potty. I do not know if it is because he does not understand the sensation of having a full bladder and then the urge to go or if he is just being stubborn since he always says he does not have to go. I personally believe he is not yet made the connection and so I am in stuck as to how to explain this part of the process to him in a way that he can understand. Hopefully, as we continue to put him on his potty he will make the connection and learn to just use the potty when he needs to and that will curb the battles we currently experience.
Additionally, because he cannot tell us when he needs to go, this leads to the problem of pooping. Namely, my son has a habit of pooping in his training underwear and not his potty. I have sought and continue to seek advice in this portion of the potty training process because frankly I am getting tired of having to change him, bathe him, and clean the clothes every day when he does this. On the positive (if there is a positive side to poopy underwear) my son does tell me when he poops in his underwear and does say he is "so sorry" he has done this. He has managed to poop in the potty a couple of times, which he thinks is "yucky" but who doesn't think it's yucky? Of course, this does not solve the problem but again, we are moving closer to the ultimate goal of being potty trained.
So my son has slowly moved out of diapers and into pull-ups and when we are home for any length of time into training underwear. We have also transitioned him to training underwear at night because he has managed to stay dry through the night and even in the morning until we put him on the potty after he wakes up (again arguing with us about needing to go). So there is a glimmer of hope that my son will not take a year to be potty trained. Next steps, telling us when he has to go, and learning to stand and pee. That should be really interesting!
My son now knows how to pee in a potty. He also knows how to sit down in the potty at such an angle so that when he pees urine does not spray all over the bathroom floor and anyone (me) who might be in the vicinity. He is also less likely to have an accident, thereby soaking his training underwear, pants, and anything else that he may be sitting on. I learned the hard way to make sure that when he is in his training underwear he is sitting on a towel. In the beginning, I was saved by the towel more times than I can count!
I was also helped in the potty training process by our awesome habilitation therapist who unfortunately is no longer with us. When she was with us, the first thing she would do is come in and set the timer and put my son on the potty. Every twenty minutes during the days that she came to our house he was on the potty. He hated it but it made a difference.
He is also making progress with sitting on the potty and actually using the potty at school. With the help of aides, he sits on the little kids potty and goes to the bathroom. I am not sure how often he is doing this but I believe it is becoming more of a regular routine on his part and he definitely has less resistance to the aides than he does to me.
But, with all the steps forward we are still a couple of steps shy of completing the potty training process. My son still argues, runs away, fights, struggles with me every time I tell him he has to go on the potty. His first response is always "don't have to" followed by "NO POTTY!" I only make him sit on the potty every couple of hours when we are at home so I know he will have to do something. Of course, once he sits down he usually pees. It would be nice for my son to acknowledge (at least once) that yes, he has to go on the potty. This leads to the other problem that we are still facing; my son still will not tell us when he has to go to the potty. I do not know if it is because he does not understand the sensation of having a full bladder and then the urge to go or if he is just being stubborn since he always says he does not have to go. I personally believe he is not yet made the connection and so I am in stuck as to how to explain this part of the process to him in a way that he can understand. Hopefully, as we continue to put him on his potty he will make the connection and learn to just use the potty when he needs to and that will curb the battles we currently experience.
Additionally, because he cannot tell us when he needs to go, this leads to the problem of pooping. Namely, my son has a habit of pooping in his training underwear and not his potty. I have sought and continue to seek advice in this portion of the potty training process because frankly I am getting tired of having to change him, bathe him, and clean the clothes every day when he does this. On the positive (if there is a positive side to poopy underwear) my son does tell me when he poops in his underwear and does say he is "so sorry" he has done this. He has managed to poop in the potty a couple of times, which he thinks is "yucky" but who doesn't think it's yucky? Of course, this does not solve the problem but again, we are moving closer to the ultimate goal of being potty trained.
So my son has slowly moved out of diapers and into pull-ups and when we are home for any length of time into training underwear. We have also transitioned him to training underwear at night because he has managed to stay dry through the night and even in the morning until we put him on the potty after he wakes up (again arguing with us about needing to go). So there is a glimmer of hope that my son will not take a year to be potty trained. Next steps, telling us when he has to go, and learning to stand and pee. That should be really interesting!
Thursday, August 8, 2013
Third Year Priority Preschool
My son started his third and final year of preschool a couple of weeks ago. He fit right back in to his classroom and teachers that he has had for the last two years. This year is a little different for him, however, he is no longer in the morning session but will be attending class in the afternoon. His class is also mostly comprised of students, who like my son, will be in kindergarten next year. This is considered a transitional class by his teacher so hopefully there will be more of a focus on kindergarten readiness. My son, thankfully has made the switch from morning to noon with no problem and is participating and getting to know the other students in his class with ease. In fact, on the first day back to school, my son just waltzed back into his classroom and began moving around from one activity to another like the seasoned preschooler that he is. I have no doubt that my son will have his most successful year yet.
For me, I entered this school year excited for my son but also anxious. I am excited because his teacher has already told me about how much progress he has made by the end of May when school let out and I know that my son will continue to learn and grow and achieve the goals the teacher and the various school therapists have set for him.
My anxiety stems from the fact that we have been provided unclear information about what this year means to my son in terms of where he will be placed for kindergarten. This is not the fault of the teachers or school therapists but rather just the nature of the way the system is set up. The teacher and the therapists cannot make any determination as to my son's placement until the end of the school year. Logically this makes sense, we want to see how my son continues to develop before making such an important decision. However, emotionally, it is a little stressful.
I tend to worry about things, events, people, etc. I can worry about things well in advance of when they take place, if at all. Not the best trait to have but it's still there. I can go into super overdrive where my kids are concerned. I actually went through a similar phase when we were trying to determine what school would be the best option for my daughter. Of course, my stress level was a little lower because I toured all the schools that we applied to and ultimately we made our decision to send our daughter to a school that we thought would best fit her and help her to do her best.
Here, with my son, we are essentially operating in the dark. Although, I can also apply to other charter schools or traditional programs available through the public schools, I have no information about what regular public school will be open next year for my son if we ultimately decide to stay with the regular public school education. This is a problem because the charter and traditional programs require that applications be submitted by the end of this calendar year and most decisions to accept an offer into one of those programs must be made by the spring of next year. Ultimately, I have no choice but to accept the fact that I will not know until the end of this school year where my son will be for kindergarten. I may not like it but I have to be patient and know that my husband and I can still advocate for the bests interest of our son.
For me, I entered this school year excited for my son but also anxious. I am excited because his teacher has already told me about how much progress he has made by the end of May when school let out and I know that my son will continue to learn and grow and achieve the goals the teacher and the various school therapists have set for him.
My anxiety stems from the fact that we have been provided unclear information about what this year means to my son in terms of where he will be placed for kindergarten. This is not the fault of the teachers or school therapists but rather just the nature of the way the system is set up. The teacher and the therapists cannot make any determination as to my son's placement until the end of the school year. Logically this makes sense, we want to see how my son continues to develop before making such an important decision. However, emotionally, it is a little stressful.
I tend to worry about things, events, people, etc. I can worry about things well in advance of when they take place, if at all. Not the best trait to have but it's still there. I can go into super overdrive where my kids are concerned. I actually went through a similar phase when we were trying to determine what school would be the best option for my daughter. Of course, my stress level was a little lower because I toured all the schools that we applied to and ultimately we made our decision to send our daughter to a school that we thought would best fit her and help her to do her best.
Here, with my son, we are essentially operating in the dark. Although, I can also apply to other charter schools or traditional programs available through the public schools, I have no information about what regular public school will be open next year for my son if we ultimately decide to stay with the regular public school education. This is a problem because the charter and traditional programs require that applications be submitted by the end of this calendar year and most decisions to accept an offer into one of those programs must be made by the spring of next year. Ultimately, I have no choice but to accept the fact that I will not know until the end of this school year where my son will be for kindergarten. I may not like it but I have to be patient and know that my husband and I can still advocate for the bests interest of our son.
Monday, June 17, 2013
Ear Tubes - Round 2
I do not know anyone who is a big fan of surgery. I definitely am not a big fan of surgery. I am even less of a fan when that surgery involves someone I love. Even less less of a fan of surgery when it involves my son.
My son, in his short four years of life, has already had four surgeries or surgical procedures. That is more than I have had my entire life! Thankfully all of his procedures have been of the out-patient nature. Perhaps, I should not complain because I am sure many parents of children with down syndrome have had to endure waiting through many more surgeries with their kids that are more complicated and indeed even life threatening.
But, I am a mom and I HATE HATE HATE it when my son has to go through this process. He just had to endure it again this past week when he had his current ear tubes removed and replaced with new ones. In the scheme of things, this is a very routine quick surgery. Many kids without my son's same diagnosis have gone through this, but I have to say, having experienced the process once does not make it any easier the second time.
We were lucky, we had gone to see the doctor, the week before and he was able to squeeze us in his schedule so we only had a weekend before my son got new ear tubes. Of course, a weekend was enough for me to have all the "worse case scenario" thoughts go through my head as a I was trying to fall asleep. This time around the anticipation was much worse for me because I remembered our first time. The worse part was recalling the look on my son's face and his howling cries as the nurse took him away from me when they headed to the operating room. It broke my heart a year ago and I did not want to repeat that again. Also more difficult this time around was the fact that my son had a better understanding that something was going to be done to him. I told my husband that I would probably break down crying if my son yelled out "Help me, Mommy!" like he does sometimes when my husband is putting him to bed.
In the end, we were fortunate, the anticipation was worse than the reality. Even though we were the last surgery of the morning, my son was not fussy or complaining about the fact that he could not drink or eat anything. It was also a tremendous blessing that the entire family went to the surgery center this time instead of just me and him. I had the support of my husband, who is very calming and my son was distracted by his sister. In fact, his sister helped him forget that he was wearing the medical identification bracelet by playing with him and when we went into the pre-op area, she entertained him by pushing him back and forth in a little car they had there for the kids. My son was laughing and smiling as he headed off to the operating room with the nurse (the nurse pushed him in the car) and thanks to my daughter and husband the moment was not as stressful as I expected.
I still don't like surgery or the idea that my son has to have surgery again. I could not get the doctor to tell me that this would be my son's last time. The doctor took a "wait and see" attitude, but at least the process went a lot more smoothly and my son was not in apparent distress over it.
My son, in his short four years of life, has already had four surgeries or surgical procedures. That is more than I have had my entire life! Thankfully all of his procedures have been of the out-patient nature. Perhaps, I should not complain because I am sure many parents of children with down syndrome have had to endure waiting through many more surgeries with their kids that are more complicated and indeed even life threatening.
But, I am a mom and I HATE HATE HATE it when my son has to go through this process. He just had to endure it again this past week when he had his current ear tubes removed and replaced with new ones. In the scheme of things, this is a very routine quick surgery. Many kids without my son's same diagnosis have gone through this, but I have to say, having experienced the process once does not make it any easier the second time.
We were lucky, we had gone to see the doctor, the week before and he was able to squeeze us in his schedule so we only had a weekend before my son got new ear tubes. Of course, a weekend was enough for me to have all the "worse case scenario" thoughts go through my head as a I was trying to fall asleep. This time around the anticipation was much worse for me because I remembered our first time. The worse part was recalling the look on my son's face and his howling cries as the nurse took him away from me when they headed to the operating room. It broke my heart a year ago and I did not want to repeat that again. Also more difficult this time around was the fact that my son had a better understanding that something was going to be done to him. I told my husband that I would probably break down crying if my son yelled out "Help me, Mommy!" like he does sometimes when my husband is putting him to bed.
In the end, we were fortunate, the anticipation was worse than the reality. Even though we were the last surgery of the morning, my son was not fussy or complaining about the fact that he could not drink or eat anything. It was also a tremendous blessing that the entire family went to the surgery center this time instead of just me and him. I had the support of my husband, who is very calming and my son was distracted by his sister. In fact, his sister helped him forget that he was wearing the medical identification bracelet by playing with him and when we went into the pre-op area, she entertained him by pushing him back and forth in a little car they had there for the kids. My son was laughing and smiling as he headed off to the operating room with the nurse (the nurse pushed him in the car) and thanks to my daughter and husband the moment was not as stressful as I expected.
I still don't like surgery or the idea that my son has to have surgery again. I could not get the doctor to tell me that this would be my son's last time. The doctor took a "wait and see" attitude, but at least the process went a lot more smoothly and my son was not in apparent distress over it.
Sunday, June 2, 2013
Second Year of Priority Preschool
Last Wednesday was my son's last day of school. Yay! He finished his second year of preschool and his second year was a great year for him overall.
I'm actually glad he made it to his last day of school because he was sick the week before and I was a little nervous that he would still be sick on his last day of school. But he was there and able to say good-bye to his teacher until he sees her again (in 7 weeks - yikes!). He was also able to say good-bye to one of the teacher aides who will not be there next year. He also was able to say good-bye to his friends. We do not know which of his friends, if any he will see again next year because next year for the first time he will be transitioning to the afternoon preschool class.
The class that my son has been in for the past 2 years is a class that is comprised mostly of new students because that was the class that the new 3 year olds joined. The class next year will have more kids that are transitioning to kindergarten the following year (like my son).
My son was a different student this past year. Being with the same teacher and same classroom made him a lot more comfortable because, he was more talkative and engaging - to both teachers and fellow classmates. Last year, he was barely talked and although he participated in activities it was at the teacher's urging rather than of his own initiative.
In fact, during the last quarter, a new student (who is also diagnosed with down syndrome) joined the class and my son played sort of a big brother role by helping and basically showing the new student the ropes. According to his teacher, my son kind of took the new student under his wing. I thought this was so cute and it also made me very proud of him.
Another change this past year that we noticed was my son's ability to name all his fellow classmates. In the previous year he only referenced a couple of students. Well, he sort of did the same thing this year but when we saw other classmates walking to the classroom or leaving, he would call them by name. I found this amazing since he did not do this last year.
I am truly impressed by how he has grown and changed over this past school year and am hopeful that he will continue to grow and improve. This, I hope will lessen my anxiety about him transitioning to kindergarten. It will be exciting to see what the next year will bring, but first, we are just happy to enjoy our summer vacation.
I'm actually glad he made it to his last day of school because he was sick the week before and I was a little nervous that he would still be sick on his last day of school. But he was there and able to say good-bye to his teacher until he sees her again (in 7 weeks - yikes!). He was also able to say good-bye to one of the teacher aides who will not be there next year. He also was able to say good-bye to his friends. We do not know which of his friends, if any he will see again next year because next year for the first time he will be transitioning to the afternoon preschool class.
The class that my son has been in for the past 2 years is a class that is comprised mostly of new students because that was the class that the new 3 year olds joined. The class next year will have more kids that are transitioning to kindergarten the following year (like my son).
My son was a different student this past year. Being with the same teacher and same classroom made him a lot more comfortable because, he was more talkative and engaging - to both teachers and fellow classmates. Last year, he was barely talked and although he participated in activities it was at the teacher's urging rather than of his own initiative.
In fact, during the last quarter, a new student (who is also diagnosed with down syndrome) joined the class and my son played sort of a big brother role by helping and basically showing the new student the ropes. According to his teacher, my son kind of took the new student under his wing. I thought this was so cute and it also made me very proud of him.
Another change this past year that we noticed was my son's ability to name all his fellow classmates. In the previous year he only referenced a couple of students. Well, he sort of did the same thing this year but when we saw other classmates walking to the classroom or leaving, he would call them by name. I found this amazing since he did not do this last year.
I am truly impressed by how he has grown and changed over this past school year and am hopeful that he will continue to grow and improve. This, I hope will lessen my anxiety about him transitioning to kindergarten. It will be exciting to see what the next year will bring, but first, we are just happy to enjoy our summer vacation.
Wednesday, May 1, 2013
A new vision
Well, it happened. My son got his prescription to get glasses. I can't say that I was surprised. It was bound to happen, not only because he has down syndrome and I guess kids with down syndrome are more likely to need corrective lenses (I don't know, I've never looked up any statistics with respect to this). But, my son also had my family history going against him. I wore glasses almost my entire life since I was a little kid and pretty much everyone else does or did too.
I was hoping that he inherited my husband's genes. Of course this did not happen. I was sad when the eye doctor confirmed my suspicions that he would have to get glasses. Even though I knew it was going to happen, it still was sad news to hear. The news to me signaled just one more challenge that we had to go through and that more specifically my son had to go through and what mom wants her son to face more challenges than necessary? Plus, this is something really difficult to explain to a four year old.
I suppose I can look on the bright side that having glasses will help his development and that it will also prevent any problems with his brain development because according to the doctor, my son would have started relying on the stronger eye and that would have made his weaker eye worse, etc. But, this was not my first reaction. Logically, I understood this but emotionally, well it would take me a few days to accept.
Despite my feelings, we got my son fitted for a new pair of glasses and since it would take a couple of weeks for them to come in, we prepared him by acting excited that he was getting a pair of glasses. I don't think he finally comprehended until he put them on today.
So far so good. I am currently bribing him with chips and the iPad. It doesn't help that he is also running a fever because of a double ear infection but he is such a trooper and has stopped crying and trying to rip the glasses off his face. Hopefully, it will be an easy transition for him.
I do have to admit (as his mom of course!) that he does look darn cute in his new glasses.
I was hoping that he inherited my husband's genes. Of course this did not happen. I was sad when the eye doctor confirmed my suspicions that he would have to get glasses. Even though I knew it was going to happen, it still was sad news to hear. The news to me signaled just one more challenge that we had to go through and that more specifically my son had to go through and what mom wants her son to face more challenges than necessary? Plus, this is something really difficult to explain to a four year old.
I suppose I can look on the bright side that having glasses will help his development and that it will also prevent any problems with his brain development because according to the doctor, my son would have started relying on the stronger eye and that would have made his weaker eye worse, etc. But, this was not my first reaction. Logically, I understood this but emotionally, well it would take me a few days to accept.
Despite my feelings, we got my son fitted for a new pair of glasses and since it would take a couple of weeks for them to come in, we prepared him by acting excited that he was getting a pair of glasses. I don't think he finally comprehended until he put them on today.
So far so good. I am currently bribing him with chips and the iPad. It doesn't help that he is also running a fever because of a double ear infection but he is such a trooper and has stopped crying and trying to rip the glasses off his face. Hopefully, it will be an easy transition for him.
I do have to admit (as his mom of course!) that he does look darn cute in his new glasses.
Monday, April 1, 2013
Potty training - the beginning
We have begun potty training. I decided that with two plus weeks of
spring break for my son that now is as good of a time as any to start.
Our pediatrician told us at one point (long ago) that it may take up to a
year to potty train my son. I am taking our pediatrician at her
word. This is going to take a loooong time.
With my daughter we could at least get her to tell us when she had to go to the bathroom. My son is not at that stage yet. In fact, he does not even bother to tell me when he has already gone and is sitting in a wet dirty underwear! And it get's worse when I have to take that wet dirty underwear off. Needless to say, I have learned to strip him down in the bathtub because he invariably gets the dirty part of his underwear on his legs and feet and sometimes his hands. Yuck!
I know we have to make it a habit and so I am trying my best to do so. Unfortunately my son is doing his best to thwart me at every turn. First by running away, giggling when I tell him it's potty time (and yes, I am giving him prizes for just sitting on the potty for 10-30 seconds) and when that does not work by standing stiff and saying in a loud voice "NO POTTY" followed by a sinister "HA! HA! HA!"
It has been a little over two weeks so far and now my son has added the words "NO UNDERWEAR" to his vocabulary. Well, at least he is learning there is a difference between underwear and a diaper or pull ups - if only in theory and not in practice.
My son is back in school and so I am having to adjust our potty training schedule accordingly. My goal is still to have him in underwear for at least a couple of hours every day and during that time I am putting him on the potty every half hour. Of course, my son always manages to go to the bathroom in his underwear, even if I am checking his underwear ever 5-10 minutes. I, however, have hope as he is becoming a little less resistant to sitting on the potty. He even told me one time that he had to go sit on the potty. Of course he told me this after he had already gone in his pants . . . but I'll take any tiny forward step as a sign to keep going on with this process!
With my daughter we could at least get her to tell us when she had to go to the bathroom. My son is not at that stage yet. In fact, he does not even bother to tell me when he has already gone and is sitting in a wet dirty underwear! And it get's worse when I have to take that wet dirty underwear off. Needless to say, I have learned to strip him down in the bathtub because he invariably gets the dirty part of his underwear on his legs and feet and sometimes his hands. Yuck!
I know we have to make it a habit and so I am trying my best to do so. Unfortunately my son is doing his best to thwart me at every turn. First by running away, giggling when I tell him it's potty time (and yes, I am giving him prizes for just sitting on the potty for 10-30 seconds) and when that does not work by standing stiff and saying in a loud voice "NO POTTY" followed by a sinister "HA! HA! HA!"
It has been a little over two weeks so far and now my son has added the words "NO UNDERWEAR" to his vocabulary. Well, at least he is learning there is a difference between underwear and a diaper or pull ups - if only in theory and not in practice.
My son is back in school and so I am having to adjust our potty training schedule accordingly. My goal is still to have him in underwear for at least a couple of hours every day and during that time I am putting him on the potty every half hour. Of course, my son always manages to go to the bathroom in his underwear, even if I am checking his underwear ever 5-10 minutes. I, however, have hope as he is becoming a little less resistant to sitting on the potty. He even told me one time that he had to go sit on the potty. Of course he told me this after he had already gone in his pants . . . but I'll take any tiny forward step as a sign to keep going on with this process!
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