We recently took the kids to see "The Fresh Beat Band" Live in Concert. This was the first concert for both kids and my husband and I were rather nervous about how they would respond. We were more concerned about our son because he had (in the past) exhibited sensitivity to large crowds and background noise. Obviously what we were doing was taking him to a facility with a lot of background noise (yelling kids/parents talking or yelling at their kids) and a large crowd. My husband and I both anticipated that we would not last the entire concert and that if we could just last a half hour we would consider our excursion a success. That being said, the price of the tickets were not cheap and we really wanted to get our money's worth!
Well, we timed it so that we would arrive at the venue a half hour prior to the start time of the concert. This would give us time to find the venue, find parking, find our seats, go to the bathroom, get refreshments and settle in to our seats with as little lag time as possible. We found our seats and were surprised that we were seated in a section that only had 4 rows and were up against a wall that actually worked as a nice buffer to the sound in the concert hall and reduced the background noise considerably. The section also made it seem a little less crowded since there were only four rows and unlike the seats on the floor we were not looking around at a sea of people. With both obstacles tackled, we looked forward to the start of the concert. I was a little worried that the music would be too loud for my kids but they did not seem bothered by it once the concert started.
During the first 15 minutes or so, I ended up with both kids on my lap because Daddy was seated behind another daddy so neither kid could see. I was seated behind a little girl so both my kids climbed on my lap. As they sang along to the words of the songs, the little girl would alternatively stand up, climb on her seat, or sit down on her knees so that she obscured the view of both my son and my daughter at various times. Finally, after she moved to the aisle, both kids were able to see.
Soon after my legs fell asleep, so I plopped my son into the aisle as well. At first, he just stood there and then he realized the step was wide enough so that it allowed him to dance to the songs while still at the same time watching Kiki, Marina, Shout, and Twist. With this realization, my son came alive and just started to boogie. Me, as a over-protective mom, tried to move him back so that he would not accidentally fall on the step and tumble into the guard rail overlooking the floor below or worse roll and fall onto the ground floor (do not ask me how many feet he the ground floor was below us - I did not look). I was rewarded with a nasty look from my son for interrupting his dancing. Then, since I could not stop his dancing, I tried to surreptitiously grab the bottom of the back of his shirt so that he again would not fall. This too failed since my son would turn to look at me and see my arm extended toward his back and just start slapping my hand away. After a few times, he finally got exasperated and stopped and yelled at me "Mom! Stop It!" At which point, I resigned myself to the fact that if he did fall off the step he was dancing on, at least there was the little girl in front of him and perhaps she would break his fall and prevent any rolling down the steps on the part of my son. Additionally, his sister joined him in the aisle and on the step and standing of to the side but in front of him also proceeded to dance and sing.
All in all it was such a fun experience for the entire family and when the concert was over, my son kept asking for more and saying "again". Luckily, we had the first Fresh Beat Band CD in the car and playing that on the way home.
Monday, November 26, 2012
Saturday, October 13, 2012
Turning 4
Last month my son turned 4. All I can say is what a difference a year makes!
As you know from my previous posts, last year was very stressful as we dealt with my son qualifying for long term care for his 3rd birthday. Needless to say that put a damper on any type of celebrating or excitement we felt for his birthday. Additionally, he didn't really understand it was his birthday and even his older sister was more excited for his birthday that my son.
This year was completely different. My son knew a month ahead of time that he was going to be turning 4 and that his birthday was coming up. Again, this was mostly thanks to his older sister telling him he was going to have a birthday soon and that he was going to get lots of presents and oh yes, be 4 now instead of three.
So, for a couple of weeks prior to his birthday when we asked how old he was going to be he said "4"! Daddy taught him how to show the number 4 with his fingers and he proudly displayed that to us whenever we asked. Of course, at some point in that time frame my son decided to start saying he was going to be 2 while still holding up 4 fingers but we quickly reinforced that he was going to be 4 and not 2.
We also celebrated his birthday this year with a birthday party for him and his friends. He was so excited when he arrived at his birthday party (we held it at Chick-Fil-A) and saw them setting the tables and he couldn't get over his birthday cake. My son was also just beaming when the guests arrived and wished him a Happy Birthday! It was so much fun to see him enjoying himself, eating his nuggets, drinking his juice and just as happy as can be. His joy was truly evident when we placed his birthday cake in front of him and he just smiled from ear to ear while everyone sang Happy Birthday to him. Since I took a video of this moment, my son loves to watch it over and over, and I have to admit I am more than glad to oblige. In fact, I had it on a repeat loop on my computer for a while until even my son got tired of watching the video.
He also had a chance to celebrate his birthday with his preschool classmates. We provided miniature cupcakes and goodie bags for his class and although we were not there during the celebration - Daddy and I opted not to interrupt his regular school routine with our presence - his teachers told us he had a great time. And I know he just had the biggest smile on his face when we picked him up from school that day.
It was so great and encouraging to see him comprehend and understand (to a certain point - as only a 4 year old can understand) what this special day was all about. For my son, this year was definitely a Happy Birthday.
As you know from my previous posts, last year was very stressful as we dealt with my son qualifying for long term care for his 3rd birthday. Needless to say that put a damper on any type of celebrating or excitement we felt for his birthday. Additionally, he didn't really understand it was his birthday and even his older sister was more excited for his birthday that my son.
This year was completely different. My son knew a month ahead of time that he was going to be turning 4 and that his birthday was coming up. Again, this was mostly thanks to his older sister telling him he was going to have a birthday soon and that he was going to get lots of presents and oh yes, be 4 now instead of three.
So, for a couple of weeks prior to his birthday when we asked how old he was going to be he said "4"! Daddy taught him how to show the number 4 with his fingers and he proudly displayed that to us whenever we asked. Of course, at some point in that time frame my son decided to start saying he was going to be 2 while still holding up 4 fingers but we quickly reinforced that he was going to be 4 and not 2.
We also celebrated his birthday this year with a birthday party for him and his friends. He was so excited when he arrived at his birthday party (we held it at Chick-Fil-A) and saw them setting the tables and he couldn't get over his birthday cake. My son was also just beaming when the guests arrived and wished him a Happy Birthday! It was so much fun to see him enjoying himself, eating his nuggets, drinking his juice and just as happy as can be. His joy was truly evident when we placed his birthday cake in front of him and he just smiled from ear to ear while everyone sang Happy Birthday to him. Since I took a video of this moment, my son loves to watch it over and over, and I have to admit I am more than glad to oblige. In fact, I had it on a repeat loop on my computer for a while until even my son got tired of watching the video.
He also had a chance to celebrate his birthday with his preschool classmates. We provided miniature cupcakes and goodie bags for his class and although we were not there during the celebration - Daddy and I opted not to interrupt his regular school routine with our presence - his teachers told us he had a great time. And I know he just had the biggest smile on his face when we picked him up from school that day.
It was so great and encouraging to see him comprehend and understand (to a certain point - as only a 4 year old can understand) what this special day was all about. For my son, this year was definitely a Happy Birthday.
Monday, August 20, 2012
Settling into the second year of preschool
It's been almost a month since the first day of school for my son. He is now in his second year of priority preschool. All I can say is what a difference a year makes.
When he started preschool last year, a week after he turned 3 years old, he had no problem transitioning to the preschool schedule and definitely seemed to enjoy it. The only concern was my son's failure to participate. He was a most avid observer of what was going on in the preschool and with his peers, according to his teacher. But her comments also indicated that he did not volunteer to join in many of the activities such as singing songs or whatever else the other preschoolers were doing. He was also very very quiet and did not speak unless he was spoken to directly.
This year, after speaking with his teacher and other therapists at his yearly IEP (Individual Education Plan) meeting, it is exciting to hear that they are finally getting a glimpse of the little boy that I see all the time at home. My son is singing songs, initiating playing with other students, doing imaginative play, speaking more, etc.
Perhaps it is because he is in the same classroom with the same teachers again this year or maybe it is just because he is getting older. Maybe getting tubes in his ears made the difference or it just could be that he is finally coming out of his shell and engaging everyone like he does at home. Whatever the reason, I only hope that he continues to develop and grow this year as he has done in the previous years. It should definitely make for an interesting school year!
Now, if he would only show some interest in potty training . . . .
When he started preschool last year, a week after he turned 3 years old, he had no problem transitioning to the preschool schedule and definitely seemed to enjoy it. The only concern was my son's failure to participate. He was a most avid observer of what was going on in the preschool and with his peers, according to his teacher. But her comments also indicated that he did not volunteer to join in many of the activities such as singing songs or whatever else the other preschoolers were doing. He was also very very quiet and did not speak unless he was spoken to directly.
This year, after speaking with his teacher and other therapists at his yearly IEP (Individual Education Plan) meeting, it is exciting to hear that they are finally getting a glimpse of the little boy that I see all the time at home. My son is singing songs, initiating playing with other students, doing imaginative play, speaking more, etc.
Perhaps it is because he is in the same classroom with the same teachers again this year or maybe it is just because he is getting older. Maybe getting tubes in his ears made the difference or it just could be that he is finally coming out of his shell and engaging everyone like he does at home. Whatever the reason, I only hope that he continues to develop and grow this year as he has done in the previous years. It should definitely make for an interesting school year!
Now, if he would only show some interest in potty training . . . .
Sunday, August 5, 2012
Stepping Up
For many months, perhaps even a year or more, my son has utilized the sliding method to go down the stairs in our house and crawled up the stairs. When he slides he turns on his stomach and literally slides down the steps. People who have never seen him do it always remark the first time they watch him that they have never seen any child go down the stairs in such a manner or that fast. Literally he slides down the stairs, I don't know how but it does not even look like he is hitting any bumps and he goes so fast that I always marvel at how he does not lose control and just keep on sliding.
His physical therapist has been patiently working with him trying to teach him how to stand erect, put one hand on the wall and use his feet to step up the stairs. My son is too small to reach the hand rail and for a long time he was even too small to step up adequately. It isn't something a person normally thinks about but the normal height of a step can be a bit too tall for a little toddler who can only raise his leg so high. So my son just slid and crawled. He mastered this method and was content to go up and down the stairs in this manner even when he saw friends over on play dates running or walking up and down the stairs.
Well, all this changed (rather quickly) in the last month. Finally, he is getting a little taller and after practicing with a ton of encouragement from his physical therapist, who faced a great deal of reluctance in my son, he began to change the method he used to go up and down the stairs.
First going up he no longer crawled in the literal sense, instead he began to place his feet on the stairs while still using his hands. It was almost like he used the plank position to go up the stairs. Then my son realized shortly thereafter that if he stood on the bottom stair he could reach the light switch. He recently figured out he was tall enough now to push the light switch to the off position - which leads to a lot of dark rooms in our house (good for energy saving but not for trying to get around at night). Standing up on the last step led to him willingly stepping down from the last step to the floor.
After this discovery, my son's improvement was relatively quick. Now realizing he was tall enough to step down, he became more comfortable with standing up and stepping on the stairs while walking up. At certain points his fingertips reached the railing but he also discovered that he could balance just as easily holding one hand against the wall. So he began to walk up the stairs. There was much celebrating by the physical therapist as well as by mommy, daddy and sister when this transition occurred.
Within a couple of weeks after he began walking up the stairs he was bold enough to walk down the stairs with the physical therapist holding one hand and his other hand against the wall. Then he walked down by himself with just his one hand on the wall! We were so excited! Now, depending on his mood he likes to walk down the stairs bracing himself against the wall (while mommy hovers by nervously because mommy is still anxious that he might fall and is not entirely comfortable with the idea of him walking down the stairs by himself) or he slides down the stairs. Most of the time it is half and half. My son will slide down the stairs until the landing and after the landing he will walk down. But he always walks up the stairs now. It is really encouraging to see him take the new steps in his development (literally and figuratively). Now all I have to do is stop his older sister from teaching him how to jump off the living room couch.
His physical therapist has been patiently working with him trying to teach him how to stand erect, put one hand on the wall and use his feet to step up the stairs. My son is too small to reach the hand rail and for a long time he was even too small to step up adequately. It isn't something a person normally thinks about but the normal height of a step can be a bit too tall for a little toddler who can only raise his leg so high. So my son just slid and crawled. He mastered this method and was content to go up and down the stairs in this manner even when he saw friends over on play dates running or walking up and down the stairs.
Well, all this changed (rather quickly) in the last month. Finally, he is getting a little taller and after practicing with a ton of encouragement from his physical therapist, who faced a great deal of reluctance in my son, he began to change the method he used to go up and down the stairs.
First going up he no longer crawled in the literal sense, instead he began to place his feet on the stairs while still using his hands. It was almost like he used the plank position to go up the stairs. Then my son realized shortly thereafter that if he stood on the bottom stair he could reach the light switch. He recently figured out he was tall enough now to push the light switch to the off position - which leads to a lot of dark rooms in our house (good for energy saving but not for trying to get around at night). Standing up on the last step led to him willingly stepping down from the last step to the floor.
After this discovery, my son's improvement was relatively quick. Now realizing he was tall enough to step down, he became more comfortable with standing up and stepping on the stairs while walking up. At certain points his fingertips reached the railing but he also discovered that he could balance just as easily holding one hand against the wall. So he began to walk up the stairs. There was much celebrating by the physical therapist as well as by mommy, daddy and sister when this transition occurred.
Within a couple of weeks after he began walking up the stairs he was bold enough to walk down the stairs with the physical therapist holding one hand and his other hand against the wall. Then he walked down by himself with just his one hand on the wall! We were so excited! Now, depending on his mood he likes to walk down the stairs bracing himself against the wall (while mommy hovers by nervously because mommy is still anxious that he might fall and is not entirely comfortable with the idea of him walking down the stairs by himself) or he slides down the stairs. Most of the time it is half and half. My son will slide down the stairs until the landing and after the landing he will walk down. But he always walks up the stairs now. It is really encouraging to see him take the new steps in his development (literally and figuratively). Now all I have to do is stop his older sister from teaching him how to jump off the living room couch.
Sunday, July 8, 2012
Blessings
My son has been a blessing, he will always be a blessing to me. Is his having down syndrome a blessing? No. And his diagnosis of down syndrome does not define him, it does not make him who he is or can be, any more than his being Chinese or even a boy.
It took me a long time to come to that conclusion, longer than I would honestly like to admit. In the beginning, as I mentioned in my first blog post, we were inundated with so much information, appointments, etc that I did not have time to think, feel, breath, process, etc.
But now, almost 4 years later, I have a son who laughs easily, forgives easily, loves easily, cares easily, hugs and kisses easily, smiles easily, etc. Sure, we still have our difficult moments as with any child but when I hear him and his sister playing, I no longer think - "I have to worry about what they are doing because he has down syndrome" (which I figured would be my automatic train of thought); instead, I just think "How nice that they are playing together so well, let's see how long this will last."
Down syndrome will always be a part of our lives, but it does not define our lives in the least. However, it has helped me to be more sensitive (I hope) to others. I can definitely sympathize more with people that are going through rough times than I previously.
My son's diagnosis of down syndrome also ended relationships in my life, ones that were apparently more fragile than I realized but his diagnosis also showed me the love and encouragement of so many friends and family who did not shy away or turn their heads. For that, I have been blessed.
Tuesday, June 19, 2012
The Ability to Hear Clearly
Since my son was a baby, we have had to make regular trips to the Ear Nose Throat doctor because he has very small/tiny ear canals that were constantly getting clogged with ear wax. In fact, when he was just born we were concerned that he had might have hearing issues because he failed his hearing test in the hospital at least two times. Afterwards we had to take him to a hearing center where they did more complicated longer testing that showed that his hearing appeared normal. Ultimately it was not until he was 6-9 months old that we were able to confirm that he did not have any hearing deficiency when the doctor performed a test under sedation.
Once we were no longer concerned with his hearing, the only issue was the amount of wax build up in his ear and how that would affect his ability to hear normally. The solution was simple - every 3-4 months we would bring him to the doctor who would check his ears and remove the wax from his ears (while a nurse and I or his dad held him down). A very traumatic experience for him and for his parents but a necessary procedure that ensured that he was hearing clearly.
As much as I hated doing this and putting my son through this torture, I knew that it was for his benefit because when his ears were clean I could see the difference and this was especially true once he started speaking and using words. Initially he would only say parts of the word (either the beginning or the end) like any other toddler or baby learning to speak but as he got older and his pronunciation was still lagging behind, it was that much more important that he had his ears cleaned. As the doctor described it to me, with all the wax in his ears he was hearing like he had cotton in his ears or a head cold and so my son was not hearing the enunciation of words as we do. Well, the cleanings helped tremendously and as much as we all loathed doing it, they became a regular event.
However, in November during a routine cleaning the doctor noticed that my son had fluid in his ears. This was perhaps due to his being sick but the doctor had him do a quick hearing test and made a note to monitor his hearing. It did not improve after 2-3 months and at that time a determination was made to insert tubes in his ears to help the fluid drain and again to help my son hear better. Due to scheduling conflicts my son did not receive his tubes until February of this year.
Why am I writing about this? I know that lots of kids get tubes in their ears whether they have the diagnose of Down Syndrome or not and that this procedure is very routine. But for my son, I believe this procedure (that took all of 10 minutes at most) made a huge difference in his quality of life. After the procedure it was as if a
new world had opened up to him. And since not only his family but his therapists have noticed a improvement in his speech. Not only his diction and pronunciation of words, which is still coming along slowly but also in his increased vocabulary and use of words. What I mean is that he is now stringing words together in phrases, where he only spoke in one word responses or two word phrases. The biggest improvement occurred at preschool when he began to verbalize more clearly. Those "good days" days at school as described by his teacher were music to my ears.
Once we were no longer concerned with his hearing, the only issue was the amount of wax build up in his ear and how that would affect his ability to hear normally. The solution was simple - every 3-4 months we would bring him to the doctor who would check his ears and remove the wax from his ears (while a nurse and I or his dad held him down). A very traumatic experience for him and for his parents but a necessary procedure that ensured that he was hearing clearly.
As much as I hated doing this and putting my son through this torture, I knew that it was for his benefit because when his ears were clean I could see the difference and this was especially true once he started speaking and using words. Initially he would only say parts of the word (either the beginning or the end) like any other toddler or baby learning to speak but as he got older and his pronunciation was still lagging behind, it was that much more important that he had his ears cleaned. As the doctor described it to me, with all the wax in his ears he was hearing like he had cotton in his ears or a head cold and so my son was not hearing the enunciation of words as we do. Well, the cleanings helped tremendously and as much as we all loathed doing it, they became a regular event.
However, in November during a routine cleaning the doctor noticed that my son had fluid in his ears. This was perhaps due to his being sick but the doctor had him do a quick hearing test and made a note to monitor his hearing. It did not improve after 2-3 months and at that time a determination was made to insert tubes in his ears to help the fluid drain and again to help my son hear better. Due to scheduling conflicts my son did not receive his tubes until February of this year.
Why am I writing about this? I know that lots of kids get tubes in their ears whether they have the diagnose of Down Syndrome or not and that this procedure is very routine. But for my son, I believe this procedure (that took all of 10 minutes at most) made a huge difference in his quality of life. After the procedure it was as if a
new world had opened up to him. And since not only his family but his therapists have noticed a improvement in his speech. Not only his diction and pronunciation of words, which is still coming along slowly but also in his increased vocabulary and use of words. What I mean is that he is now stringing words together in phrases, where he only spoke in one word responses or two word phrases. The biggest improvement occurred at preschool when he began to verbalize more clearly. Those "good days" days at school as described by his teacher were music to my ears.
Friday, May 18, 2012
Long Term Care - my thoughts
I've had time to think and reflect about the process for my son to receive long term care and I realized that the entire process and even the day of the interview was upsetting to me. Aside from the stress it caused, I felt like I was on the verge of tears or on the verge of having a nervous break down every time I thought, mentioned, or discussed the process with anyone. During the process itself, I believed it was just because I was so stressed and scared about my son not continuing to receive the therapies he was received but looking back I realized it was more than that.
As a parent one of the joys we have is sharing with other about the accomplishments of our children. We boast about how well they are doing in school, how they are excelling at sports or other extracurricular activities. Our Facebook pages include pictures and video clips of all the wonderful things are children are doing and rightly so. We as parents are proud of all the things they can do - from the first time they roll over or sit up or take their first step, its all captured on video and proudly displayed to all.
The long term care interview is exactly the opposite. Instead of focusing on my son's accomplishments, I was asked to highlight all the things he could not do that other children his age could. I was asked to point out and identify how and where he lagged behind in milestones. As a mom, this is simply heartbreaking. I have and had been striving for the past 3 years to focus on what my son could do and what he had accomplished, not what he didn't. Isn't that the point of his having the various therapies - so that he can get all the help he needs to do the best he can to keep up with other little boys and girls his age?
Just as I did for my daughter, I cheered and marveled as he learned to roll over from his tummy to his back, as he learned to crawl and take his first steps. Sure, he may have done it several months or more later than when his sister learned to crawl or took her first steps but it was wonderful to experience just the same and no less exciting. But the long term care questions did not relish the fact that my son could do all these things, instead it was more of a penalty that he was not so far behind his peers!
So, I prayed and hoped that my son would have a bad day on the day of the interview and asked my friends and family to do the same. Because if he had a bad day, then the interviewer would not see what my son could do when he set his mind to something but rather someone else. I remember thinking was I a bad mother to be hoping for a bad day for my son? But, I honestly did not want my son to decide that day to show off and all of a sudden jump with his feet off the ground or walk a straight line because the interviewer would never believe that he really truly could not do that and this was his first time and they just might make the difference in whether or not he qualified for long term care.
Really, a mom or parent/guardian should never have to be in this position but because of the way they determine the qualifications for long term care we had no choice. I needed to present the best picture of a reverse resume of my son's abilities to the interviewer. Despite my normal inclinations or tendencies I had to remember to hold back on sharing what my son had already accomplished and what he was working on so there was no misinterpretation. It's a process that I did not enjoy and thankfully won't have to repeat for a couple of years.
As a parent one of the joys we have is sharing with other about the accomplishments of our children. We boast about how well they are doing in school, how they are excelling at sports or other extracurricular activities. Our Facebook pages include pictures and video clips of all the wonderful things are children are doing and rightly so. We as parents are proud of all the things they can do - from the first time they roll over or sit up or take their first step, its all captured on video and proudly displayed to all.
The long term care interview is exactly the opposite. Instead of focusing on my son's accomplishments, I was asked to highlight all the things he could not do that other children his age could. I was asked to point out and identify how and where he lagged behind in milestones. As a mom, this is simply heartbreaking. I have and had been striving for the past 3 years to focus on what my son could do and what he had accomplished, not what he didn't. Isn't that the point of his having the various therapies - so that he can get all the help he needs to do the best he can to keep up with other little boys and girls his age?
Just as I did for my daughter, I cheered and marveled as he learned to roll over from his tummy to his back, as he learned to crawl and take his first steps. Sure, he may have done it several months or more later than when his sister learned to crawl or took her first steps but it was wonderful to experience just the same and no less exciting. But the long term care questions did not relish the fact that my son could do all these things, instead it was more of a penalty that he was not so far behind his peers!
So, I prayed and hoped that my son would have a bad day on the day of the interview and asked my friends and family to do the same. Because if he had a bad day, then the interviewer would not see what my son could do when he set his mind to something but rather someone else. I remember thinking was I a bad mother to be hoping for a bad day for my son? But, I honestly did not want my son to decide that day to show off and all of a sudden jump with his feet off the ground or walk a straight line because the interviewer would never believe that he really truly could not do that and this was his first time and they just might make the difference in whether or not he qualified for long term care.
Really, a mom or parent/guardian should never have to be in this position but because of the way they determine the qualifications for long term care we had no choice. I needed to present the best picture of a reverse resume of my son's abilities to the interviewer. Despite my normal inclinations or tendencies I had to remember to hold back on sharing what my son had already accomplished and what he was working on so there was no misinterpretation. It's a process that I did not enjoy and thankfully won't have to repeat for a couple of years.
Saturday, May 12, 2012
Long term care - the interview
A week after my son's third birthday, the day arrived for his long term care interview. I didn't sleep much the night before and was nervous to say the least. This was an important day for all of us and would decide how our next year of therapy played out for my son.
The questions posed by the interviewer were nothing out of the ordinary. The questions focused on whether or not my son had mastered various milestones for each age group (3 months, 6 months, 9 months, 1 year, 2 year, etc). What was interesting was the fact that the questions (newly distributed that year according to the interviewer) focused mainly on his physical development. Yes, my son's ability to roll, crawl, walk, pick up a block, properly hold a crayon are all important in determining his need for future therapy but, in my opinion, just as important was and is his ability to express himself and his needs and desires. Yet, there was only maybe one or two questions related to how he communicated with us or others. Apparently, all the experts decided that the communication/expression aspect of a child merited little regard with respect to development.
Well, despite my opinions - which I did express, the interviewer couldn't do anything except go through the questions she had. I answered them to the best of my abilities, keeping in mind that unless he had mastered a particular skill (i.e. he was doing it all the time with no problems) my answer to each question of whether or not he could do something was to be no. I think this caused my interviewer to raise her eyebrows a couple of time when I answered no at the beginning of the questioning but so be it.
I managed to make it through the 45 minute or so interview without bursting into tears (although, I came close once) and all we had to do after she was gone was wait for her to enter the scores into the system back at her office and let us know whether or not he qualified. The wait was excruciating but thankfully not long. We found out by the end of the week that our son had qualified for long term care, barely - like literally within a couple of points but he qualified. It was such a huge sigh of relief and then I did shed tears.
Thereafter, the transition was pretty easy. We were assigned a new support coordinator and the therapies continued as normal. At my first meeting with the new support coordinator she informed me that aside from the therapies my son was already receiving, we were now eligible for respite and habilitation. I did not know what either of those services were but I learned that respite meant that someone would come in and watch my son and give me a break. Woo hoo! Habilitation meant that someone would come to our home and also work with my son on daily routine stuff. I have not had a chance to start either service yet but am looking forward to it. We were also given supplemental/secondary insurance. This was something new because we did not have any additional insurance under the state plan.
The questions posed by the interviewer were nothing out of the ordinary. The questions focused on whether or not my son had mastered various milestones for each age group (3 months, 6 months, 9 months, 1 year, 2 year, etc). What was interesting was the fact that the questions (newly distributed that year according to the interviewer) focused mainly on his physical development. Yes, my son's ability to roll, crawl, walk, pick up a block, properly hold a crayon are all important in determining his need for future therapy but, in my opinion, just as important was and is his ability to express himself and his needs and desires. Yet, there was only maybe one or two questions related to how he communicated with us or others. Apparently, all the experts decided that the communication/expression aspect of a child merited little regard with respect to development.
Well, despite my opinions - which I did express, the interviewer couldn't do anything except go through the questions she had. I answered them to the best of my abilities, keeping in mind that unless he had mastered a particular skill (i.e. he was doing it all the time with no problems) my answer to each question of whether or not he could do something was to be no. I think this caused my interviewer to raise her eyebrows a couple of time when I answered no at the beginning of the questioning but so be it.
I managed to make it through the 45 minute or so interview without bursting into tears (although, I came close once) and all we had to do after she was gone was wait for her to enter the scores into the system back at her office and let us know whether or not he qualified. The wait was excruciating but thankfully not long. We found out by the end of the week that our son had qualified for long term care, barely - like literally within a couple of points but he qualified. It was such a huge sigh of relief and then I did shed tears.
Thereafter, the transition was pretty easy. We were assigned a new support coordinator and the therapies continued as normal. At my first meeting with the new support coordinator she informed me that aside from the therapies my son was already receiving, we were now eligible for respite and habilitation. I did not know what either of those services were but I learned that respite meant that someone would come in and watch my son and give me a break. Woo hoo! Habilitation meant that someone would come to our home and also work with my son on daily routine stuff. I have not had a chance to start either service yet but am looking forward to it. We were also given supplemental/secondary insurance. This was something new because we did not have any additional insurance under the state plan.
Monday, March 19, 2012
Turning 3 & Long Term Care part 1
As I already posted when my son turned 3 he started pre-school. But there was another aspect of his turning 3 that was not as easy.
From the time we started with services through the state we were told that once our son turned 3 the funding would be switched from the state to federal funding. Of course when didn't think much about it since 3 years old seemed so far away at the time but as he approached 3 in September, I became much more aware of what that meant. As a person who likes to have some control, I had absolutely no control over the changes and that sent my stress level into overdrive. There were many things I learned about the process of switching from state to federal assistance that I wished were outlined more clearly prior to the actual event.
First, two months before my son turned 3, I contacted our current support coordinator to request that he submit an application on our behalf for long term care. I never saw the application and had nothing to do with it. This was simply something our support coordinator did. Although we talked about it for several months prior, I still had to call and remind our coordinator to submit the application.
Why two months before my son turned 3? Well apparently the application process is a long one and it is better to start the process before my son turned 3 so there would be less potential of disruption in services versus starting the process at the time he turned 3. Makes sense I suppose. Of course, we still didn't know exactly how long the process was going to take and it was sort of a cat and mouse game because we were told we didn't want to submit an application too early. As part of the process, an evaluation is required and we didn't want him evaluated before he turned three because there are apparently different or additional questions that is asked for a child who is 2 years + 1 day shy of 3 years old versus 3 years old.
Second, the funding for my son's services from the state ceased on his birthday. And that meant, as far as the state was concerned, that we were no longer to receive any services on or after his birthday. What a nice birthday present for him. There was absolutely no leeway as far as the state was concerned. I was really surprised when my support coordinator told me this (in a nice way of course) and really felt like I had been punched. My first reaction was, great - now what do we do? We can't have the therapists come anymore because the state won't pay but we still didn't know when we would hear from the long term care people. So my son would have his therapies disrupted for who knows how long? This was frustrating to say the least!
Fortunately, I learned that the companies that the therapists worked for or the therapists themselves offered something called private pay. As you can guess, it means that we pay them privately for the in between period when the state no longer supplied funding and my son had not qualified for long term care. I wished I had learned about this prior to my son turning 3 but at least I learned that my son had an option and that his services could continue. Of course, the cost of paying ourselves for several different therapies was daunting because even at a pro-rated fee the therapies are not cheap and we really didn't know how long we would have to do this. In the end we decided that we would participate in private pay and hoped that my son would qualify for long term care sooner rather than later.
From the time we started with services through the state we were told that once our son turned 3 the funding would be switched from the state to federal funding. Of course when didn't think much about it since 3 years old seemed so far away at the time but as he approached 3 in September, I became much more aware of what that meant. As a person who likes to have some control, I had absolutely no control over the changes and that sent my stress level into overdrive. There were many things I learned about the process of switching from state to federal assistance that I wished were outlined more clearly prior to the actual event.
First, two months before my son turned 3, I contacted our current support coordinator to request that he submit an application on our behalf for long term care. I never saw the application and had nothing to do with it. This was simply something our support coordinator did. Although we talked about it for several months prior, I still had to call and remind our coordinator to submit the application.
Why two months before my son turned 3? Well apparently the application process is a long one and it is better to start the process before my son turned 3 so there would be less potential of disruption in services versus starting the process at the time he turned 3. Makes sense I suppose. Of course, we still didn't know exactly how long the process was going to take and it was sort of a cat and mouse game because we were told we didn't want to submit an application too early. As part of the process, an evaluation is required and we didn't want him evaluated before he turned three because there are apparently different or additional questions that is asked for a child who is 2 years + 1 day shy of 3 years old versus 3 years old.
Second, the funding for my son's services from the state ceased on his birthday. And that meant, as far as the state was concerned, that we were no longer to receive any services on or after his birthday. What a nice birthday present for him. There was absolutely no leeway as far as the state was concerned. I was really surprised when my support coordinator told me this (in a nice way of course) and really felt like I had been punched. My first reaction was, great - now what do we do? We can't have the therapists come anymore because the state won't pay but we still didn't know when we would hear from the long term care people. So my son would have his therapies disrupted for who knows how long? This was frustrating to say the least!
Fortunately, I learned that the companies that the therapists worked for or the therapists themselves offered something called private pay. As you can guess, it means that we pay them privately for the in between period when the state no longer supplied funding and my son had not qualified for long term care. I wished I had learned about this prior to my son turning 3 but at least I learned that my son had an option and that his services could continue. Of course, the cost of paying ourselves for several different therapies was daunting because even at a pro-rated fee the therapies are not cheap and we really didn't know how long we would have to do this. In the end we decided that we would participate in private pay and hoped that my son would qualify for long term care sooner rather than later.
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