Back to School Jitters

School started about two and half weeks ago and C is now in the third grade.  He is in upper-elementary.  Is he ready?  At first, I thought it would be too much for him to handle but now I think he might just be able to follow along even if he has to work a little harder to keep up... He surprised us, hubby and I, when he went and scored within one point of the passing score for his reading test, prompting the school principal to recommend promotion to the next grade when, in fact, hubby and I had already decided to make him repeat second grade. Looking back, however, I think it was probably a good thing that we went along with the principal.  Given the many challenges C faces, especially when it comes to language and reading comprehension, I have to admit it was really amazing that he did that well on the reading test.  This kid struggles just to get the right words out of his mouth, needs extra time to process language, is often confused when asked a question and yet, manages to pull very close to the passing score. Better yet, whereas in first grade, he did not attempt to complete the test, in second grade, he actually focused, tried and succeeded to a certain level. He showed tremendous growth and his teacher was elated.  We were elated.  She'd been his teacher since kindergarten and could fully appreciate his progress.  I wonder if the change is due to maturity, hard work or a combination of both.
Unfortunately, she is no longer working with him this year and I'm really worried.  Just when C was turning a corner, just when that teacher had finally figured out how to get him to work and use his brain, she was given a different assignment.  She's still at the school, C still gets to see her occasionally but he won't be working with her, Darn it!  There is no more varying exceptionalities at the school now. There used to be two VE classrooms with two teachers and now there's none. The other VE teacher who used to work with students in grade 3 to 5 was given an administrator position and is no longer at the school.  If she had stayed, she would have been C's teacher maybe and that would have been better still, than dealing with two new teachers.   Now, C will be going to a resource room where he will work with two different teachers: one for reading and one for math. Not sure how he's going to do working with two teachers but I'm not happy about the change. This is a big testing year for him. A benchmark year and he has to adjust to two, not one, two new teachers plus a new gen ed teacher?!  All sorts of questions are going through my mind: They don't know him. He doesn't know them. Will they be able to work with him? To motivate him to try his best? Will they even understand how to work with him, the impact of his disability on the way he learns and works?  Do they have any experience working with students on the spectrum who are also language impaired?  How will C respond to them? Will he be able to manage working with two, no, three new teachers? Will this be a good change for him? Does this mean that he will be spending more time in gen ed since he will no longer have an assigned desk with his name and own supplies in another classroom? And if he does spend more time in gen ed, will he benefit from that? 
I guess we just have to wait and see how it all unfolds. The only other option would be to transfer him to another school but wouldn't that be even more traumatizing for a kid who relies on familiarity to function? I wish I knew the answers to at least some of these questions but I don't. Not knowing what this school year holds, not being able to even predict just a little bit how it's going to go is truly nerve-racking. I hope and pray that he pulls through. He's a fighter.  Let's see what happens this year. 

My little boy is growing up

C is growing up and I guess I'm not alone in admitting it gives me a bittersweet feeling to know that my boy is getting older. I've heard so many parents say they wish they could slow down the clock or even turn back the hands of time just to enjoy their kids' younger years a little longer!  Well, I feel that way, too. When kids get older, things get more complicated. There are more expectations. Society puts more pressure on what the right behavior is supposed to be and the bar is set even higher for C and other kids like him who already have a hard time meeting expectations by no fault of their own.  When they are younger, things are still simple enough that we, their parents, can still let them do what makes them happy, watch them be happy doing what they want, what gives them joy without worrying about others staring, commenting or whispering. 
What may be less common is the fear that sometimes clenches my gut when I look at my baby and see new problems emerging, new challenges and wonder what they are, where they come from, whether he will outgrow them and whether I can help him get past them. I love my son more than my own life and would love to have that guarantee that his life will turn out OK but unfortunately, I don't have that luxury.  I can't look through a crystal bowl and predict the future but I do have faith. Faith in God and faith in His love for C, a love that I'm told, is even greater than the love I have for C.  It is that faith that helps me confront the challenges that come up as C continues to grow and change. My boy is loved. He is loved by me, by his dad, by his family and by God! He has a lot of people on his side, people who are ready to go above and beyond the mere call of duty to make sure he is OK, that he ends up OK. So when I look at him and  notice something new, something that will turn out to be a challenge before it is deconstructed, understood and dealt with, when I feel fear taking over, I hang on to the knowledge that C is loved.  And he knows it. And that goes a long way into helping him feel good about himself, feel good in his own skin. I love you C. There I said it. And I'll say it to you many, many times throughout your life. And don't you forget it!

C's bad mood

C had a rough evening yesterday.  We went to this baby shower and of course there were lots of kids there.  C wanted to play with them I think... He did not say so but knowing him, I assumed he would want to join into their games and run around with them.  In fact, there was a group of boys playing basketball in the street when we got there and C approached them and said "pass it to me", referring to the ball. Of course, since the kids didn't know him and were seeing him for the very first time, they stopped playing for just a minute to stare at him.  It would have gotten awkward if I not called C back to stay with me so that we could go in and see our host.  C was not happy to just sit around a table with us and our friends.  He was curious as he usually is whenever he goes somewhere for the first time.  After awhile, I asked hubby to take him for a walk and he did but then, they were back much too soon and I knew something had happened.  When hubby had taken C inside the house to explore the premises(we were sitting in the backyard), C had tried to push the door to a bedroom open to see it but of course, hubby had stopped him.  Well, that was the beginning of C's bad mood.  He was angry and was not trying to hide it.  He came back to the table, sat down and crossed his arms frowning the whole time.  When I tried to ignore him, he tapped my arm which forced me to look at him only to see him looking back at me with a frown.  He never said a word and when I asked him what was wrong, he just kept on frowning before turning his face away from me.  I must say that he had the desired effect.  Everyone noticed that he was upset and it did put a damper on the festive mood around the table.  It lasted for a good hour if not more and it took a lot of distracting, attempts and negotiating to get him back to his regular self.  He finally turned the corner when hubby brought over a platter of fruits which caught his attention.  He immediately started sampling them and I guess he got so busy exploring the different tastes(He has oral defensiveness so he did not actually eat them), that he lost some of his anger.  After that, C actually joined us for a dance or two, taking turns dancing first with both his dad and I, then with his dad, and finally with me.  But I learned something about C last night: He has his feelings and he's not afraid to show them!   

C.

C. was born at 24 weeks and 4 days in New Jersey. I was then a second-grade teacher and hubby was working in South Jersey. Sometimes he worked from home and the day C. was born, it just so happened that he was home. I remember the contractions starting Thursday or Friday of the previous week, right after an upsetting situation that had occurred at work. They were very light at first and I did not become alarmed until Friday night when the pain became increasingly unbearable. Hubby urged me to call the doctor on Saturday morning but something was going on with shift change at the answering service and I was put on hold for so long that I just hung up. We were supposed to go to New York that weekend so we went. I was in pain the entire time I was there but had no idea that I was in pre-labor. One of my colleagues at work had reassured me on Friday saying that what I was feeling were Braxton-Hicks contractions and so I left that alone until Sunday morning when I just could not take it anymore. I finally got through to an on-call doctor who told me to  get into a bathtub with Epsom salt to ease up the contractions.  I thought that was ridiculous so I did not do it. There was no way I could sit quietly while my body was being racked by what felt like rings of fire. Huh huh.. So we went back home hubby and I, hubby clearly worried. I was tolerating the pain as best as I could but by Monday morning, wasn't feeling much better. Hubby pleaded with me not to go to work but I did not listen. I was supposed to attend a workshop that day but I did not even make it through that. I was doubled up in pain and would have stayed there if one worried co-worker had not decided to take me home. She drove my car and my husband brought her back to work. Things happened pretty fast after that. I went to the doctor who told me she wanted me to go to a high-risk women center and that's where they gave us the news that I was actually in labor. The doctor who examined me called my obgyn who instructed me to go the maternity ward of the hospital. At this point I wasn't really sure I understood what was happening. I remember telling my husband to stop by a Taco Bell ( I had Taco Bell cravings all throughout my pregnancy) because I figured I was going to be at the hospital for a while and did not want to go there hungry. It never crossed my mind that I would be giving birth that day and so we went and just like that, the contractions increased in frequency.  As soon as I got there, I was admitted and hooked up to monitors. Nurses were inciting me to stay calm and not to push, my obgyn was there, monitoring me and the baby and suddenly, my son's leg broke through the sac.  They had to take him out. I was screaming for them to take him out anyway and my husband sort of became numb(my poor hubby). They took me out and I didnt' see him until after C was born. I remember getting an epidural; I remember hearing my son cry and then they took him to the NICU. Before I gave birth, a group of neonatalogists came to talk to hubby and I asking us if we wanted them to resuscitate the baby if he came out not breathing and we said yes. We figured it was not up to them but to God whether he lived or died so we went for resuscitation. And so C was born weighing 1lb 9oz and, measuring 13 inches long. He spent eight(8) months in the NICU and,  one (1) month in a Florida PICU. Altogether, C spent the first nine(9) months of his life in a hospital and did not even get to see his baby room in New Jersey. When we moved from New Jersey to Florida, he was still in the NICU and traveled on a hospital plane with doctors and nurses to Florida where he was admitted to a PICU. I have to say though, that by that time, C was stable enough to leave the hospital and before our move was finalized, the NICU doctors were already trying to talk us into moving him to a specialized children's home where they took care of kids who were medically fragile. C. was medically fragile because he was on a ventilator, needed oxygen and had a trach. But we did not want that. Hubby and I categorically refused to move him to that recovery house and were gearing up for a fight when this move came about. So the time he spent in the PICU was really to transition him to a home vent which was a smaller, portable vent and monitor his progress on it. The PICU doctors tried to convince us to get him a G-tube but we refused since he was able to eat by mouth and that, to me was the best decision we ever took as C's parents. Things have been rocky in the years that followed but C has made some great progress. He stopped using the ventilator at sixteen (16) months, got off oxygen at about the same time and when he was two and a half, underwent trach reconstruction for a collapsed trachea. That was the most important of all of his surgeries and he'd already had two before that: a pda ligation and a tracheotomy.  C started talking right before starting kindergarten. Of course, his speech is delayed, some sounds are unclear and he does have serious language issues but he talks. He is language impaired, which essentially means that he does not always understands everything that people say to him the way he should but he does talk. The best way to communicate with him is by using plain, direct language and if needed, to use visual cues as well but that's a giant leap forward.  He reads, too. Not the way he should but a lot better than I expected. than everyone expected. He loves to watch TV, way too much and yes, he was diagnosed with PDD when he was six years old. What does he do mostly that's symptomatic of PDD: He perseveres on objects, ideas or activities and when he wants something, will ask the same question until he receives an answer. He's mildly autistic because, though he is socially awkward, he does seek the company of other kids, wants to play and interact with them and engages in their games occasionally.  I think, and so does my husband, that his communication impairment holds C back a lot of the times and keeps him from trying too hard to interact with other kids out of fear of being rejected but, we're working on that. He's getting a lot of therapy and we're hoping that this will help him overcome some of his challenges. Time  will tell.

Cincinnati

We go to Cincinnati once a year or once every two years as needed.  Most of the times it's just C and I. When things are more serious, like when C was having major surgery in 2005, my husband comes, too. He may come with us, leave to go back to work then come back to take us home.  This year it was just the two of us again. My son is such a trooper I have to say.  He goes there all excited about getting on a plane, waits stoically to be seen by the doctors, goes through a bit of anxiety and manages to remain calm all the times in between. Sometimes, I wish he could tell me how he feels about all of this. He's been going to Cincinnati since he was two and half years old.  He was probably too young to remember what happened that far back, which is a good thing since the worst happened back then, but he went back when he was three, four, five and six years old. Right at six, they(the doctors) told us that we could wait two years before coming back and we did.  Luckily, nothing happened during that time to make us go earlier and so, this past Sunday, C and I boarded a plane and flew to Cincinnati to go see the doctors.  I don't like going to Cincinnati.  I don't know anyone there.  Well, I know some of the moms I met when C and I stayed at the Ronald McDonald's House for three months but we didn't keep in touch so bottom line: I don't know anyone there.  When I go to Cincinnati, the hospital is the friendliest place I can find.  There, they know my son is a patient.  They know what we go through, the anxiety of it all and they really try to help us out anyway they can.  There's a Family Resource Room where I go to kill time while waiting.  Sometimes I go there with C but there are times when I go just to "breathe" (pardon the pun) and see other people, get on line or, just to get off the surgery or main floor. I didn't go this time around. I probably should have but I just didn't. Now, the hospital gift shop, I always visit. C loves it there. He always, always finds something he wants there and, though I say no to many of his requests, I usually end up buying him one thing. Why not? He's there by himself, away from home, away from his familiar environment so why not? And the other place we usually visit is the cafeteria. I like it there, too. Not so much because of their hot food, nothing spectacular there really but because of their soup, salad and cold product compartment. This time, I went for their pita chips and hummus but C could not eat most of the things there so he only had chocolate milk. Still, it's somewhere to go and just sit for a few minutes. The Guest Services Department is really good, too. They actually offer rides to the neighboring drugstores and the drivers do many runs throughout the day. I needed to go to a Walgreens or CVS after one of C's appointments this week and, they were able to arrange for one of their drivers to take us there, wait for us and bring us back to the hospital. They also offer discounted tickets to family attractions in the area but I've never used those. There's just no time for that when we go to Cincinnati. The only time we were in Cincinnati long enough for something like that to happen, C was hospitalized for two weeks straight then had to stay put at the Ronald McDonald House and go to the hospital for checkups.  I must say, the Ronald McDonald House is the best option by far for families with kids who have to be there for a long time.  They use a sliding scale to charge for the room so that's great for the finances.  They have two playrooms, a nice playground, volunteers who cook dinner for the guests every evening and offer different kinds of activities not only for the kids but for their parents, too.  I was able to stay there twice or was it three times out of all the times I had to bring C to Cincinnati.  I was very grateful for their hospitality while I was there and being just across the street from the hospital really helped, too. The only thing is that they have a looooong waiting list and families have no guarantee that they will get a room there. When you call to tell them that you will be in town on such and such date, they recommend you book a room at a hotel, ask for your phone number and contact you if, and only if a room frees up. I think they go by priority: The neediest families are always given priority based on their child's medical  condition and treatment needs. When C needed to stay in Cincinnati for those three months, they considered us a priority so we got a room pretty fast. The other two times, we were just lucky. And thankful.  I've been going to Cincinnati long enough to have stayed at a hotel that closed two years ago. It was a historical hotel and it had become our regular home away from home whenever we were in town and could not stay at the Ronald McDonald House.  Funny to think that it no longer exists... We've also stayed at a hotel that was located in the heart of downtown Cincinnati and, at another one that was right across the river in Kentucky.  That was the same one we stayed at this time.  On our last trip two years ago, C and I went to a really nice shopping mall in Covington, Kentucky. That was one of the nicest things we ever did there. They have an aquarium, some shops, a movie theater and C and I walked around before having lunch at one of the restaurants inside the mall.  It was pretty nice and, it provided a welcome distraction from the real reason we were there. That last time,  C's aunt also came to visit us with her family.  It was nice to see some familiar faces and we all sat together and had lunch at the hotels' restaurant. She didn't come this time around; she couldn't but it was just as well because we had no gap long enough in between our appointments that would have allowed us to spend more than one hour together. I didn't want her to drive two hours or more just to see us for one hour, especially since we just saw each other back home when she came to my house for C's First Communion. We're home now and assuming all goes well, we won't be going back to Cincinnati for another two years.

Cincinnati

Cincinnati

Cincinnati

We go to Cincinnati once a year or once every two years as needed.  Most of the times it's just C and I. When things are more serious, like when C was having major surgery in 2005, my husband comes, too. He may come with us, leave to go back to work then come back just to be there.  This year it was just the two of us again. My son is such a trooper I have to say.  He goes there all excited about getting on a plane, waits stoically to be seen by the doctors, goes through a bit of anxiety and manages to remain calm all the times in between. Sometimes, I wish he could tell me how he's feeling about all of this. He's been going since he was two and half. He was probably too young to remember what happened that far back, which is a good thing since the worst happened back then, but he went back when he was three, four, five and six years old. Right at six, they(the doctors) told us that we could wait two years before coming back and we did.  Luckily, nothing happened during that time to make us go earlier and so, this past Sunday, C and I boarded a plane and flew to Cincinnati to go see the doctors.  I don't like going to Cincinnati. I don't know anyone there. Well, I know some of the moms I met when C and I stayed at the Ronald McDonald's House for three months but we didn't keep in touch so bottom line: I don't know anyone there. When I go to Cincinnati, the hospital is the friendliest place I can find. There, they know my son is a patient.  They know what we go through, the anxiety of it all and they really try to help us out anyway they can.  There's a family resource room where I go sometimes just to kill time while waiting.  Sometimes I go there with C but there are times when I just go to "breathe" and see other people, get on line or, just to be off the surgery or main floor. I didn't go this time around. I probably should have but I just didn't. Now, the hospital gift shop, I always visit. C loves it there. He always, always finds something he wants there and, though I say no to many of his requests, I usually end up buying him one thing. Why not? He's there by himself, away from home, away from his familiar environment so why not? And the other place we usually visit is the cafeteria. I like it there, too. Not so much because of their hot food, nothing spectacular there really but because of their soup, salad and cold product compartment. This time, I went for their pita chips and hummus but C could not eat most of the things there so he only had chocolate milk. Still, it's somewhere to go and just sit for a few minutes. The Guest Services Department is really good, too. They actually offer rides to the neighboring drugstores and the drivers do many runs throughout the day. I needed to go to a Walgreens or CVS this time around and they were able to arrange for one of their drivers to take me there, wait for me and bring me back to the hospital. They also offer discounted tickets to family attractions in the area but I've never used those. There's just no time for that when we go to Cincinnati. The only time we were in Cincinnati long enough for something like that to happen, C was hospitalized for two weeks straight then had to stay put at the Ronald McDonald House and go to the hospital for checkups.  I must say, the Ronald McDonald House is the best option by far for families with kids who have to be there for a long time.  They have two playrooms, a nice playground and provide many different kinds of activities for the kids themselves and for their families throughout the week.  I was able to stay there twice or was it three times out of all the times I had to bring C to Cincinnati. It also helps in the finance department since they use a sliding scale to charge for the room. I was very grateful for their hospitality while I was there and being just across the street from the hospital really helped, too. The only thing is that they have a looooong waiting list and families have no guarantee that they will get a room there. When you call to tell them that you will be in town on such and such date, they ask that you book a room at a hotel, ask for your phone number and contact you if, and only if a room frees up. I think they go by priority: The neediest families are always given priority based on their child's medical  condition and treatment needs. When C needed to stay in Cincinnati for those three months, they considered us a priority so we got a room pretty fast. The other two times, we were just lucky. And thankful.  I've been going to Cincinnati long enough to have stayed at a hotel that closed two years ago. It was a historical hotel and it had become our regular home away from home whenever we were in town and were not able to stay at the Ronald McDonald House.  Funny to think that it no longer exists... We've also stayed at a hotel that was located in the heart of downtown Cincinnati and, at another one that was right across the river in Kentucky.  That was the same one we stayed at this time.  Last time I was there, I guess that would be two years ago, C and I went to a really nice shopping mall in Covington, Kentucky. That was one of the nicest thing I ever did there. They have an aquarium, some shops, a movie theater and C and I had lunch at one of the restaurants located inside the mall.  It was pretty nice and, it provided a welcome distraction from the real reason we were there. That last time,  C's aunt also came to visit us with her family.  It was nice to see some familiar faces and we all sat together and had lunch at the hotels' restaurant. She didn't come this time around; she couldn't but it was just as well because we had no gap long enough in between our appointments that would have allowed us to spend more than one hour together. I didn't want her to drive two hours or more just to see us for one hour, especially since we just saw each other back home when she came to my house for C's First Communion. We're home now and assuming all goes well, we won't be going back to Cincinnati for another two years.  And that's exactly what happened.