Monday, September 30, 2013

Special Education

Just recently, our school district started announcing some informational meetings they were going to have for the parents of students with special needs in the district.  Chris and I thought it would be good for us to attend so that we could hear what they had to say and also to start to immerse ourselves into this community that we are still relatively new to.  

The purpose of the first meeting (as described) was to talk about the changes that were being made in the district for the special education department.  Going into this meeting, I knew there were some unhappy parents because just prior to school starting there were some changes made where special education classes were moved to a new building (the basement of that building) without much notice given.  The interim director tried multiple times at the beginning of the meeting to say that it was going to just be informational and that they didn't want to address personal issues at that meeting but would be open to talking about them after the meeting was over.  

Once the first question was addressed, the meeting started to get pretty heated and people were having side conversations, people started yelling and then slowly, the meeting changed gears and started to lose the purpose that it was intended.                                                                                                            

There was a second meeting held tonight with an itinerary to discuss the technology being implemented in the district for both general ed and special ed with special monies and grant money given to the district.  He was not 2 slides into the presentation when the questions started to get personal about what kinds of things their children should be getting and what they weren't getting.  He tried to address the fact that this meeting was to discuss what IS happening from this point forward but I think the general feeling is of skepticism by parents there.  

While I completely understand that these parents have legitimate concerns about the education of their children, it upsets me to see the way things are approached and get handled.  While I attend for information, I leave with incredible anxiety over what's in store for my child (not because of bad experiences we have had but because of the bad experiences people are voicing).  People scream about what's not being done and can't ask basic questions without tones in their voices and incredible negativity. I don't want to judge because I haven't been down their roads yet, but I still feel that there are appropriate ways to handle things and voice concerns when asking questions.

I will be quite honest here.  We have been incredibly fortunate so far in our process of starting Colin out in the public school and in creating an IEP that we've been happy with.  We love Colin's teacher and feel that she is working hard to meet his needs.  We think that we have had a good transition so far into the IEP creating process and know that there will be some challenges ahead as we try to find a good balance between our high expectations for Colin and what he needs academically.  It just scares me to attend these meetings and listen to this raw anger because quite frankly, it's intimidating.  I am hoping that the changes that this department is voicing will come to fruition and the changes that some people are looking for will happen for their children.  

Friday, September 27, 2013

Potty Updates

This week has brought some positive changes in Colin's world of potty training.  Last week, Colin's teacher contacted me after experiencing some frustrations with a powerful arc that was soaking the floor at school when seated on the potty.  She wanted to try having him sit down or stand up and at first, I was wary of it because he doesn't have the strength to hold himself up on the potty and I had no idea how he would handle the change in trying something new.  It seems to be the trick that has motivated him to go more often at school and will even occasionally ask to go.  

We have tried implementing the standing up which is hit or miss.  I don't think we have the right equipment for him to be completely successful so I need to look into this further.  He will step up onto the step-potty and lean over to the back to hold on, but I can tell it's hard work to hold himself up and often gives up pretty quickly.  

He is also doing really well with the routine of washing his hands afterwards.  He does much better with this at school, but I love watching how serious he is with it.  The only negative is that when he is more tired, he will put the soap right into his mouth.  

While we are still really far off from being "potty trained", we are still headed in the right direction.

Tuesday, September 24, 2013

School Update

One of the things that has been the hardest for me ever since we transitioned to preschool from Early Intervention is the change in communication between school and home.  For the first three years, we were always fully involved in Early Intervention because the therapists had spent so much time at our house.  We knew exactly how Colin was behaving, how well he was participating, what kinds of progress he was making, etc.  While the communication between Colin's teachers and therapists and us has been great, it's obviously different because of the fact we are not with him while he is at school all day long.  

Last year we implemented a communication notebook for Colin's therapists and teacher to use back and forth with us and we found that it helped a lot.  We didn't expect them to write in it every day (we would get a daily sheet home most days anyway) but found that it was kept up on a regular basis.  When the potty training stepped up last year, his teacher started a chart for all of us to keep so that we could all know when he was going and whether or not he was having accidents.  That was always a challenge because it didn't always make it home from daycare and while everyone did the best they could, it often seemed difficult to maintain.  

This year, I included a potty chart that I quickly make every night in the communication notebook and have also added Colin's daycare teacher to the book.  It has been tremendous because she is now in the loop AND has been very thorough in her communication with us.  With the potty chart being a part of the notebook, it has cut back on how much "extra" stuff we have to worry about with everything being in the same place.  The downside to the communication notebook is that sometimes, we are getting so much information that it can be difficult to hear.  Colin's teacher at preschool has written numerous notes saying that some of the smaller behaviors she was dealing with him in school has greatly improved.  Most of the behaviors that we are dealing with now include very typical toddler "skoochie" behaviors and not always being the best listener.  While I am happy for the detailed communication, hearing all of the "bad" things Colin does in a day doesn't always sit well.  However, I know that for the typical parent, they don't hear all of these things that we purposely ask to know.  These are behaviors that we observe among other kids but know that their parents aren't always made aware because they are essentially minor "typical" behaviors.  

On the bright side, there have been many positive things we are hearing daily.  It's been really nice to see the progress that Colin is making this year!

Wednesday, September 18, 2013

Structure and Routine

We are a few weeks into our normal routine again and every day has the same kind of structure to it.  Both are transitioning pretty well into their new daycare and we have gotten {mostly} positive notes home about Colin's transition back to his public preschool program.  It has been really good for all of us to know what to expect every day but also to have some freedom from the schedules on the weekend.  I could write another 10 posts about how awful potty training is going (for BOTH of them), but I will refrain because I have a feeling my stress over it will just turn into complaining.  So, we just keep trudging on and take things day by day.  

We caught this scene today....melt my heart!

Monday, September 16, 2013

Best Buds

I'll be there for you
(When the rain starts to pour)
I'll be there for you
(Like I've been there before)
I'll be there for you
('Cause you're there for me too)

Wednesday, September 11, 2013

Family Dinner

I was very fortunate growing up that my family sat down at the table together and ate dinner as a family.  There were times we had to talk about our highlights of our day, we were always asked what we did at school, and most times it was filled with lots of laughs.  When life started to shift and Chris and my family together began, it was important to me (and Chris as well) to continue our tradition and eat together as often as possible.  With Chris' job now, it can be difficult at times to maintain this every night, but we have always made sure that if we are all home together, we sit at the table and eat together.  

It's funny how life works sometimes and you find yourself crossing paths with people who become your lifelong friends and extended family.  My first job out of college was as an Athletic Trainer at Monmouth University for the women's soccer team.  On my first day out on the field, one of the girls (Meredith) came right up to me and introduced herself immediately (which put me at ease).  

Colin and Meredith
 At the time, Chris and I had just started dating.  At the same time, I was also getting to know another athlete on the team (Mo).  Both were always so welcoming and included me in many of their events and activities outside of soccer (I wasn't that much older than either of them).  After working there for two seasons, I ended up getting a job as an athletic trainer at the high school that Meredith went to and shortly after, she got a teaching job there as well (in the middle school, which is where I am now).  Over the course of years, we all started hanging out outside of our jobs and then eventually, Meredith bought a house within 2 miles of the house Chris and I had bought.  Mo moved in with Mer, then later followed by Kelly (Mo's high school friend) and then our family dinners were truly born.  Soon after, my sister Kim moved to the area and the family grew by 1.  

Mo (with Kailey), Kelly, Kim, Meredith, me with Colin, and Chris

Once a week, we rotate between our 3 homes (Mo recently bought her own home) and have our family dinner together.  We talk about our highs and lows of our day (that's Mo's favorite), talk about our days, and laugh together just like any traditional family does.  

I am definitely the sap of the group, so it won't be any surprise to them to see me say this, but I am truly lucky for this family of mine who are faithful and supportive friends no matter what life brings.  They each bring their own uniqueness to the "table" and are true friends in ever sense of the word.  They have plunged into the ocean with us in the winter in support of Colin, they have babysat, picked the kids up from school, and treated our kids just like they were part of their own list could go on and on...and on...

I am so very lucky to have this family of you guys!

Monday, September 9, 2013

The Potty Saga Continues

When I look back over my life and think about all of things that have been major challenges, I find myself forgetting what they felt like.  Even when I think about those moments shortly after Colin was born and we were told that he has Down Syndrome, I don't remember the worst of it (and that's not me putting that time lightly, it's just that so much time has passed and life is so normal, it doesn't feel as the "worst" time anymore).  I'll obviously never forget what those moments brought us, but I've lost so much of what it used to feel like.  Two childbirths even seems like a distant memory...

Potty training?  That's a pretty fresh challenge and I know what that feels like.  Now I know that I'm being pretty dramatic when I say all of this but right NOW, THIS feels like THE hardest challenge I've faced yet.  (Believe me, one day I am sure I will have moved onto something else and this will be a distance memory.)

With all of the transitions taking place in going back to school, BOTH Colin and Kailey have been having some pretty big struggles.  This was a rough weekend for both and we've been having way more accidents than successes.  Most days I can maintain my patience and understand that this a process, and it's called training for a reason, but on some few days like this weekend I become an emotional wreck and don't know how I am going to do this for one more day.  

I think what makes me so emotional is the fear of going backwards which is essentially what I feel like happened now.  Somewhere along the way, someone made a comment on one of my blog posts when Colin went back to school and initially had some struggles that Colin hasn't forgotten what we taught him but is adjusting to the changes and new routines (that completely true).  

I don't have a blind eye to the positives because I see the things Colin still remembers and has learned through all of this.  He still tells us most of the time when we are at home (even if it's after he's gone already) and pretty willingly goes to the bathroom after telling us it's time.  

I am more surprised with all of this with Kailey (my typical child) that it hasn't been a smoother process.  She seemed to have picked it up pretty quickly but lately, she is having many accidents.  I know she is still "young" but she completely understands the process.  I thought that once she went back to school, she would start to improve once again because it was what "everyone" was doing.  

So, now that I've regrouped (once again, for the 10th time) we'll continue to work at this for as long as it takes (and boy does that feel like forever! Yes, dramatic again, I know).  

I have been more ok with putting the kids in pullups when it's necessary (for Colin, that's all of the time at school) and that has helped with some of my stress about all of this that I've let go a bit.  

I am also trying to stress less because I have found that Colin does the best when it's just us and no one else around and/or activities/events going on.  The fact that I know this has helped me ease up a bit.  

Before all of the messes and accidents, we spent a beautiful September Saturday morning at the beach.  

The kids had a fun time and I have to laugh because Colin even told me he needed to go to the car to go potty (we have a travel potty in there) 3 times (we went back twice) and he actually went.

So once again, this post was more for myself to remind myself that there are positives and they didn't forget EVERYTHING they learned....

...and for me to be 100% honest about the emotional mess I've become over potty training.  

I can't wait for the day I look back on all of this and laugh at the potty training ordeal as I'm crying over the next challenge....haha.

Friday, September 6, 2013

1st Week Recap

The first week of every year has pretty much been the same when sending the kids back to daycare for the first time after the summer.  It is always to be expected that the kids will have and need some transition time to get used to the change in routine.  This year brought some new changes with it in that they both started school in a new location.  As expected, I had lots of anxieties about starting them in a new place, but as I sit here and write tonight, I am confident that we made a great choice.  

Chris does drop off in the morning and had a rough time earlier in the week when both weren't too happy when he was leaving.  Each day, the texts became a little more positive with the improvements in their demeanor when getting to school.  It is no secret that I have been a little upset and discouraged about the sudden change in Colin's potty habits as he stopped communicating his need to go and was having lots of accidents (at school).  We made a joint decision to put him back in pullups at school because of the amount of accidents but obviously still continue to work towards getting back in underwear again.  Colin's teacher and the owner of the school continuously highlighted the positives of his days and continued to stress that they felt it was simply due to the transition of starting the new school (especially since he's still been doing pretty well at home).  

The owner kept saying that we needed to "make friends with the potty" with  him at school until he got comfortable with it.  Chris would go in with him in the morning and then I would follow suit in the afternoon.  The first two days he cried, the 3rd day he went in but didn't sit, and then today after getting into the classroom, he ASKED Chris to take him to the bathroom.  He didn't go, but that was big in itself.  Then, this afternoon, he went in, showed me which potty he wanted to use, and WENT.  Woo hoo!  

We celebrated with ice cream and our friend Mo tonight the end of our first week back to structure and routine again.  We celebrated transitions and working back to skills that were "avoided" in a new location and I celebrated the new teachers who have worked really hard to make sure Colin and Kailey have felt happy and loved in their new school.  I am grateful that we have found a good fit for the kids and that Colin's teacher has a lot of love and patience to go through this transition with him.  

Colin's teacher has been completely open to the communication notebook that I started for this school year for notes and recording the potty information.  She has written extremely thorough notes back and forth with me and finished the week out with this one...

"We had such a fun day! Colin is starting to interact a little more each day.  He still enjoys circle time with our songs, morning stretch, pledge, and stories.  Today he was the weather man and told us it was sunny! He makes me smile.

Colin and I had a bonding moment after lunch today.  I was on the floor picking up and helping him with his lunch box.  He grabbed my face and started playing "peek a boo" with me.  Then he gave me hugs and kisses and was playing with my eye lashes.  Then he let me touch his.  He made me feel very special today.  Thank you for entrusting him to us.  He is truly a special little boy and you two are wonderful parents.  Have a great weekend!"

If Colin plays with your eyelashes, then you are in with him.  

I am one thankful Mommy tonight.... 

Tuesday, September 3, 2013

1st Day of School!

Today was Colin and Kailey's first day of school at their new daycare.  Sadly, we had to make the decision over the summer to find a new location that would suit both of the kids and would accommodate Colin's need to take the bus to daycare from his preschool program.  We had a nice situation last year in which we had help getting Colin to the old daycare because a few people would pick him up, but it just wasn't feasible anymore.  

This new school came highly recommended by a few different people so we were confident that we were making a good decision, however, given our situation last year with Colin at the new daycare we tried, I have been a bit anxious about the transition.  Both kids had "meet and greets" that went pretty well and I have had a really good feeling about the teachers we have met so far.  

Kailey has been really excited about going to school and did well at dropoff today, but Colin had a harder time when Chris was leaving him.  His teacher said that he stopped after about 5 minutes and she used his "special book" that I made for him about his summer vacation (I made a little story with lots of pictures to be used for both daycare and preschool/speech therapy).  

Unfortunately, my fears were confirmed when his teacher told me that he never communicated his need to go to the bathroom and had multiple accidents.  In addition, the "scheduled" times that the whole class was going didn't produce any successes either.  As soon as I walked into the classroom though when I got there, instead of coming over to give me a hug, he told me he had to go.  He was still in a pullup from nap time (my one hang up) which was wet.  I was feeling frustrated and overwhelmed about all of it and felt the stinging of tears when she was trying to look at all of the positives of the day (and there WERE positives).  However, you know what I've gone through in getting to this point and just felt defeated when it was like we went completely backwards.  

I got both of the kids in the car and drove all of the way up to OT/feeding therapy when I realized that I forgot Colin's lunch box at school that was packed with the food items he needed for therapy.  When the feeding therapist came out so I could explain everything to her, I started tearing up and then crying (in a waiting room full of people) because Colin first fought going back with the OT and then I was venting my frustrations about the potty situation.  She's a mom of 6 and quickly brought me back to the positives again.  

Don't get me wrong, I KNOW this is a HUGE transition for Colin (for both kids actually) as he is starting in a new school with a new teacher and new friends.  However, it has been a lot of hard work for all of us in getting to the point where we are at and I'm just hoping we aren't going to quickly pedal backwards with all of this.  

Colin was originally supposed to start preschool tomorrow, but unfortunately, his school is closed for remediation due to a mold problem and all of the classes are being moved to another building in the district.  The opening date has been pushed back to Monday the 9th so that the teachers can set up their new classrooms in the new building.  I know that Colin will be pretty good with that transition since his teacher, paras, and many classmates will still be the same.  

Starting the year off is always a big transition for all of us and I know that all of things I was frustrated with today will work themselves out.  Hopefully, these things will be worked out sooner than later and Colin will figure out just how to communicate his needs just like he was with us.  

Here's to a great 2013-2014 school year!

Sunday, September 1, 2013

A Little Scare

For the past month or so of summer, Chris and I have felt that something has been off with Colin.  While he had been mostly acting himself, he seemed more tired than normal and a lot of activities that he would attempt or participate in were short lived and he would need to take more rests than we were accustomed to.  However, we still had a hard time pinpointing exactly what it was because it's always been obvious to us that Colin doesn't have the same kind of stamina that Kailey does.  Despite being on the beach (a place Colin loves), he still seemed to tire more easily.  He's always had some difficulties tolerating more extreme temperatures, so it seemed like it could have also been attributed to the higher temperatures.  We also noticed that he was starting to get some discoloration beneath his eyes, similar to raccoon eyes.  I had a script for a CBC from the pediatrician (she often gives me the scripts knowing my paranoia regarding the higher incidence of leukemia in our kids where I am free to use them if things don't seem right to me), thyroid function levels (from the endocrinologist), and a script for a celiac workup from the gastroenterologist.  

After I received a call from the endocrinologist saying that the thryoid levels were normal, I called the pediatricians office to see if she had received hers.  The secretary told me they had not, but I attributed it to the fact she had just changed offices to this new location.  On Thursday, the office called to verify Colin's appointment for a well visit on Friday and I asked again if they had received them.  When they told me they had not, I told her why I thought this was the case and after giving me a hard time, she said she would follow up with the lab so that the results were in the pediatrician's hands by Friday.  

Later that night, we went for ice cream and I had left my cell phone in the car.  By the time we got back in the car 45 minutes later, I had a missed call from one of the pediatricians in the new group that ours had moved to with a voicemail saying that he needed to speak with me right away.  I had also discovered in that minute that Chris had the same missed call and just as I was about to follow up, my phone started ringing again.  The doctor told me that Colin's hemoglobin and hematocrit levels were really low and he wanted us to take Colin to the ER at a hospital a little further from our hometown one because he wanted us accessible to the hemotologist we had used in the past.  The hemoglobin in your blood is the protein responsible for carrying oxygen in your body and the hematocrit counts indicate your red blood cell counts. There was also another number (I can't remember the name) with a low iron count. He was sending us right away because he wanted Colin's levels retested to check for falling numbers that could possibly indicate the need for a blood transfusion. 

We were obviously taken by surprise and quite nervous for the possibilities. However, even though Colin has been off, I was pretty confident that he wasn't sick enough to need a transfusion. 

He was quite the charmer at the hospital despite it being past bedtime. The blood draw was pretty rough because they missed his vein and then when they got it, caused a quick blood spurt. The ER doctor said that this happens all of the time (kids being sent to the ER for dropping numbers) and mentioned that this had probably been happening over the course of months. The hemoglobin levels had just slipped by .02 about 10 months ago during his last blood draw. 

While it was a rough evening, we walked away feeling that it was good to err on the side of caution, but we also now know that Colin is pretty anemic, which explains a lot of things. He has started an iron supplement that he will need for a minimum of 6 months and our pediatrician will be consulting the hematologist to see if further testing is necessary. Quite a little scare but at least we now know what's been up with him!