Wednesday, November 28, 2012

PT Progress

One of the adjustments that Chris and I had to make (ok, maybe me more than Chris) was the change in the level of communication from having the therapists here in our home to sending Colin somewhere else where we don't get to see what's going on on a daily basis.  While I think that the change is 100% better in terms of how Colin performs (he's often less "scoochy" when we aren't around), it has been  hard for me to not know everything.  Colin's teacher sends home a daily sheet which mostly details the educational components for the day which is helpful in terms of what his lesson is for the day.  However, at the start of this year, we also instituted a "communication notebook" so that if we had more questions or other information needed to be relayed, it could all be put in one place.  So far it has been pretty successful, however, we don't receive as much information from the therapists (aside from speech; more on that in a bit) as we did when they were right in our home (totally acceptable for us as we know the bigger goals they are working on in OT and PT and these are subtle changes with time).

Every once in awhile, Colin's PT will email us and send pictures with more detailed information about the progress he has been making.  We knew that she was working on jumping for awhile, but just transitioned to bike riding skills.  Today couldn't have been a more perfect day for me to receive such an email highlighting Colin's progress.  

Her email started by saying, "Instead of sending a wordy note home, I thought since Colin seems to be enjoying his success at trike riding, I would send you pics and a video as a visual".  She then went on to talk about the modifications she made to the bike (using velcro straps on his feet to provide input) to assist him get used to the motions first.  She also is using a jump rope to help assist him move the tricycle at first. 

It was exciting to see the progress he is making and coincidental since a little birdy may have mentioned that Santa is bringing the kids matching tricycles this Christimas!  

The notes home from his speech therapist (very detailed) have not been as encouraging.  We know this is a significant challenge and delay for him and she has been working really hard on specific concepts right now.  She uses the picture flash cards that I made using family members to work on actions and she often writes that he needs maximum cues.  She is also trying to get him to identify actions like "Mommy is ______".  She also mentioned that it's hard to decipher between what is him not knowing versus lack of initiation.  These notes have been hard to take because it sort of feels overwhelming that we are all working hard and not seeing as much progress in this part of his development.  I am sure that one day we may see a spurt where it becomes evident that he "took it in with time" but it's difficult to hear now!

Tuesday, November 27, 2012

Feeding Update

I pulled out this oldie but goodie today because in all of the challenges we have faced so far with Colin having DS, the BIGGEST one has been the feeding issues.  I can't tell you how lucky we are to have avoided some of the major medical issues associated with children with DS, but since the day he was born, have struggled in some way with getting Colin to eat.  As a newborn, he had to stay *just* an extra night in the hospital because he wasn't eating well and I basically begged the pediatrician to let us leave the next day because I wanted to go home and "be normal" as quickly as possible.  

I have described our struggles on here many times, and have recently resurfaced the evaluation and therapy route to tackle this once again after a hiatus for about a year.  We feel ready to approach this again and hope that even if it takes a long time, we start to see some progress.  

We have currently been attending a new rehab facility for this associated with the endocrinologist and gastroenterologists that we have been seeing regularly.  The evaluation was really informative and we felt as though we were headed in the right track after meeting with Miss Josie. After a good amount of time waiting for an appointment to open up and approvals to go through insurance, we had our first therapy appointment today and felt really satisfied with how it went.  I left feeling very optimistic and think that with Miss Josie we just may see some progress in the right direction.  

She had a very loose approach today just to get Colin comfortable with her and used a very powerful (games on her iphone)!  After talking for a bit and seeing that Colin was warming up very quickly, we were able to sneak out without him making a peep.  She worked today just by adding a bit of texture to his yogurt (very finely crushed up graham cracker) and just trying to get him to visually tolerate goldfish near him while they worked on other things.  

One of the things that she said has resonated with me and am looking forward to seeing her put this approach in action (which we of course follow through with)..."I am going to push him, but not force him".  

We have goals for the week and then will meet again next week.  Looking forward to seeing progress!

Monday, November 26, 2012


The kids and I had a quiet dinner together tonight; Colin with his cottage cheese and Kailey and I had some pasta with sauce.  For such a quiet dinner it sure was a messy one!

Chris and I have been saying grace with the kids for awhile now and even though Colin's speech isn't the most clear, he does a pretty good job of saying the words with us!  

Thanks for a lot of your advice on my blog post yesterday.  I am so grateful to have so many of you "out there"!

Sunday, November 25, 2012

A Few of "Those" Moments

I've been having a few of those "moments" lately that only creep up once in awhile, but when they do, makes me feel a little "down" in terms of how some things are progressing.  We have been having a tough time in certain areas of Colin's development lately and while most of them are things I know he WILL eventually accomplish, it's really hard getting through in the present time.  

The hands down number one issue that we have been struggling with lately is potty training with Colin.  We had waited for awhile to even start because we knew that he wasn't ready and then once we found the right seat, we started after this past summer.  As I mentioned in a previous post, he does not initiate having to go, but rather, we try and keep him on a schedule so that he is going around the same times every day.  We were having some success for awhile where he put up a fight to get into the bathroom, but then would go every time on the potty.  He loved praise and then flushing the toilet so it seemed to be going ok.  However, lately, he is not having success outside the house, and here is getting worse.  Not only does he put up a big (often crying) fight getting to the bathroom, he won't even go once he is on the potty (although he did go once today).  

So, we are looking for some advice from some of you pros out there (although I do understand that the same things don't work for everyone).  Do we just keep pushing through on our schedule even though he puts up a fight and lately won't go, OR, do we suspend it for awhile and revisit the issue in a few weeks? a month? 

My difficulties in this lie in the fact I have a magic number in my head and we get closer and closer to that number...(stupid, stupid numbers)

Our second issue lately is Colin's (and Kailey's too) behavior.  We ARE consistent and don't let things go the more tired and weary we get of these things, but there are times where I feel as though I have said the same things 1,000,000 times and he still does the same things over and over.  While we have not had any issues reported from school (thank goodness), the way he has been with his sister lately is atrocious. What is more frustrating to me is putting him in time out and not letting him out until he says "sorry"; to get him to actually say it sometimes it is extremely difficult.  He knows exactly what he is doing. There are times that I have a hard time differentiating between what is typical toddler behavior and what may be influenced but his lack of communication, stemming from having DS.  I also know there are other  issues out of our control lately like the fact Chris has been traveling a lot with work but I still don't feel as though that's always the reason.

As always, Colin's feeding issues make the list but to be honest, it is what it is right now.  He is eating, drinking, and growing, however cannot introduce any new things to the few that he eats now.  We have had him eat some pizza here and there, and the beverage variety (although the amount he drinks is very minimal) seems to be a bit better as well.  We start feeding therapy on Tuesday (yay!) so I pray that even if it takes awhile, we start to see some progress here.  

While I am so happy with the progress Colin makes at school and the things they are working on there, every once in awhile, some other areas of development and milestones creep into my head and I get frustrated.  He has been increasing his vocabulary slightly and we are noticing that he is putting a few more words together to try and communicate something, however, the frustration on both ends is palpable when he isn't understood.  

While I am really happy that with guidance, he has become pretty comfortable with letters, shapes, and numbers, we seem to be stumbling with the colors.  The difficult thing is that there doesn't seem to be an app that I can find that is exciting enough to keep his attention, he could care less about flash cards, and keeping his attention on any certain object long enough to identify colors has been difficult.  There are times where he identifies a few successfully and other times its as though he takes a guess and is unsuccessful every time.  I have thought about doing some photoshop type things to put Chris or I with a color, but not sure how to go about doing this either.  It feels a bit overwhelming!  

I know that just like Colin, I go through some phases myself especially when it feels as challenging as it does right now.  There are times that I wonder if we aren't doing enough but when I rationally think about it, I know that we are trying as hard as we can in many different ways. While the way in which I handle things has changed with time when it comes to this sort of thing, there is one thing that doesn't change and that is the fact that these "moments" and "feelings" do make an appearance every now and then.  

I'll be honest, having Kailey take her crackers out of her bowl today and count them pretty successfully triggered some of these feelings too (even though I am really proud of what she can do too!).  

Some fun pics from the weekend of hanging out with Becker!

The three of them were giggling together during this picture!

Kailey was all over him!

Friday, November 23, 2012

A Lot to Be Thankful For

It's hard to believe that this holiday season has already started!  I think it sort of feels a bit crazy when it when we essentially lost a few weeks due to Hurricane Sandy.  However, this year I am grateful to be able to be in my home with my family...It's been tough around here in the past month, but I am amazed at the resiliency of a lot of people to start over and rebuild their homes, businesses and attractions.  I am thankful to have a job, wonderful schools for my children, food to put on the table, and lots of love from many friends and family.  

We had a busy day yesterday, but well worth seeing family throughout the state.  We started out at breakfast with Chris' family, the kids Gammy and Grandpa, Aunt Beth, Uncle Jason and his parents...

...and then headed north to my Great Aunt Elinor and Uncle Stan's house for the last Thanksgiving there as they are closing on their house next week after very many years and lots and lots of Thanksgivings.  We spent a bit of time at the park down the street to let the kids get out some energy from being in the car, and then went over for dinner.  

Aunt Elinor in the middle, my mom, and my 2nd cousin Christine

I am lucky to still have 3 of my 4 Grandparents (my Grandfather is turning 90 in July!)...

I am very blessed to share this life with Chris, Colin, and Kailey and look forward to many more ahead.  Happy belated Thanksgiving!

Tuesday, November 20, 2012

Public School/Transportation Issue

** Bear with me with my story, it's rather lengthy! **

When Colin was starting the public school program last April, we knew that we were going to have to make changes concerning where he would go in the afternoon.  We originally started with babysitters but it was only a temporary option to get us through the rest of the school year.  Over the summer we did our research and settled on the new daycare in town that he could be bussed to.  However, there was something that didn't sit well with us and there were little things that added up with time.  When Colin's behavior started to change, we knew that he was uncomfortable but given his lack of communication, had been unable to really tell us what was bothering him.  That location wasn't a good fit for him and the only way we could establish that was to take the cues that Colin has been giving to us.  

When things started to get a little bit of out of control in terms of how we felt and the way Colin was acting, I spoke to the CST case manager that works with us and Colin in the school district.  I explained that we felt it was necessary to pull Colin out of the daycare, however, did not want to make him transition to a new daycare setting at this point in the school year and have to adjust to another new teacher, setting, and classmates.  I told her that we really felt it would be good for Colin to go back to the place that he knew, felt comfortable with, and was where his sister was.  She reiterated that district policy states that students can not be bussed out of district however, suggested that we call transportation and discuss the situation with him.  She followed up with Colin's teacher (which I had done also) to see if the behavior issues from the daycare were also occurring at preschool (they were not and his teacher said he had not even hinted towards that sort of behavior) and she also spoke with the Director of Special Services and someone in transportation.  She was told that they had to follow policy regarding transportation.  

When I spoke with the transportation office, I could not get further than the secretary.  It was suggested to me to put my request in writing and in that letter, I discussed some of the problems we were facing with Colin in his school setting at the daycare, the fact that we accommodated to the policy by finding a new daycare location, among other concerns I had regarding his regression due to his discomfort.  I also discussed the fact that the daycare we wanted him bussed to was located only 2.5 miles outside of town lines.  I dropped off the letter in person on October 19th.  

A week later, I had not gotten a response so I called and followed up and the secretary I spoke with said that the letter was still in Colin's file and she did not have any information to provide me with.  Unfortunately, the hurricane hit and the process was stalled by 2 weeks.  When we got back to school, I called my case manager to see if she had heard anything (she had not).  I told her we had already made the change because it was necessary for Colin but if the bussing did not work out, we would find a solution because we felt it was best for him.  I was being very patient because we had a temporary solution, but in order to figure out what was next, needed an answer from the district.  

Our case manager has been following through almost daily just to check in (she's been so great and helpful and I am so grateful for her!), but today (a month after the letter was dropped off), she suggested I follow up with transportation to see what the status was.  

I want to preface my phone calls from today by saying that I have been very patient, and very nice to everyone I have spoken to.  The first secretary I spoke with had no idea what I was talking about, another person called me back and said that they had a list of daycare facilities in town to choose from (obviously had NO IDEA that I sent in the letter), I called that person back and couldn't get to her but was talking to another secretary who put me on hold and patched me through to a different woman who immediately came at me about policy and that he won't be bussed.  I told her I understood the policy, which was why I wrote a letter (addressed to the director of transportation) discussing some special considerations I was hoping they would take into account in making the decision.  She kept saying "policy", "won't be bussed", and "we can't do it for one child".  I was growing frustrated because she wouldn't listen to what I was saying (I was simply trying to discuss the letter), she was extremely rude, and made me feel as though I was a parent who had been calling incessantly or pushing so hard.  The only reason I even got a response today was because I CALLED to follow up since I had not heard anything.  She gave wrong information (told me that I was given an answer already which I had not) and could not even identify any of the points I had made in the letter.  Every time I asked if the director had read it, she avoided the question to the point where she said she would give it to him.  So, my letter has been there for a month and the person who is supposed to make the decision hasn't seen it?!  

Here's the thing.  If the answer is still no no matter who looks at it, then fine, but what is really disheartening is that the letter didn't even get where it was supposed to go, and I did things the right way.  I wasn't pushy, I wasn't rude and I was simply seeking a solution to a problem that was best for Colin.  

So, I have been compiling my list of things to say, and I will make more phone calls tomorrow.  I decided I want to speak to the director himself to make sure my concerns have been heard.  I never wanted to be the parent that had to push so hard, but I'm pushing because Colin wasn't even given the opportunity to be considered.  He's 3; I think it's only fair.  When I had spoken with the case manager the first time I told her that we prepared to be told no but i just wanted to make sure i dis the best i could and if the answer is still no then thats ok... 

Monday, November 19, 2012

It Hasn't Been Easy

These 2 kids have been particularly "frisky" lately and it has been challenging to say the least!  I think it's especially frustrating for me when they are not at a point to be able to adequately tell me what is bothering them, especially Colin.  Bedtime has been an absolute nightmare again (probably worse than when it all started the first time) and it brought me to tears last night because I am at a loss to know what to do.  It certainly didn't help that Chris was not around to help with it (which was probably part of the problem, no fault of his own).  I have a baby gate that I am borrowing for thanksgiving day and have been contemplating trying it in his doorway (that has been a suggestion from several people) but my only fear in trying it is Colin actually hurting himself in frustration (when we tried holding the door last year, he started banging his head on the door).  I can only keep my fingers crossed each night and hope that it goes better than the night before. 

Kailey, on the other hand....whew, her drama is out of control!  It's not a good sign when her teacher at school tells me that she was clingy and whiney all day there too.  They actually proposed teething (which does make a lot of sense) and tonight she was gnawing incessantly on her fingers.  It's funny though because she was so clingy this morning wanting me to hold her when I couldn't yet tonight, I make sure I get things done really quickly to snuggle with her, and she wants nothing to do with me! I had to laugh...

I was excited to get a call this week saying that we finally got an appointment to try this new feeding therapy out for Colin.  We did this evaluation about a month ago now but couldn't get a time slot that fit our schedule. However, he's all set for November 27th and I'm hoping for some progress (even if it's really slow progress!).  He has been a tad bit more willing to try some things here and there which he had never been willing to do before.  

At our friend Quinn's baptism yesterday, Colin actually ate some cake (that was drenched in cool whip, but even so, it was cake!).  He ate a significant amount which was really encouraging.  He also ate a small piece of pizza all by himself the other night (although, hasn't wanted some since).  Some baby steps are better than none!

 And even though there were LOTS of moments I wanted to pull my hair out yesterday with these 2, they still managed to shock me and sit together for a good 20 minutes, SHARING, and watching a show together.  Some days it's the little things!

Saturday, November 17, 2012

Special Olympics of NJ Awards Dinner

Last night was the Special Olympics of NJ annual awards dinner. We were invited last night because our little boy landed himself on the cover the of awards dinner program, the awards that were given out AND at the VIP table with the president of the Special Olympics NJ and his family, AND Women's Soccer Olympic Gold medalist, Carly Lloyd.  The experience for us is truly a motivational, inspirational and emotional night.  We are so proud of Colin for what he has accomplished in just a few short years.  

The first part of the night was the cocktail reception, and Colin spent the hour and a half walking up and down the hallway saying hi to those that were there, shaking hands and giving hi-fives.  He loved the attention he was getting and when he found the backdrop for pictures, walked right up and said "Mom, Dad, Cheese!".  

We found some ways to kill time by hanging out in the business center (it was tiring walking up and down the hallway over and over again in heels!) or in an enclosed foyer area (until he figured out how to open the door by  himself).  

There were so many highlights to the evening, but the keynote speaker of the evening was Carly Lloyd from the USA Gold medal Olympic Women's Soccer Team.  Colin particularly hammed it up with her and sent her kisses across our table.  

We were really, really proud of Colin because he sat at the table all night with us.  We did have some help and are incredibly thankful for having the ipad to bring with us but even despite that, he was such a good boy for the length of time we were there and only being 3 years old!  At the beginning of the night, Colin was introduced for his picture appearing on the program and he knew exactly what to do; he turned around, smiled and waved at the crowd.  I could have died.  

My life has evolved in more ways than I could have ever imagined because of Colin.  I had some great conversations last night with a few adults with Down Syndrome that gives me a lot of hope for Colin's future. For so long, my life path was moving along just the way it was supposed to.  I went to college, got a job, met the guy, got married, and was then pregnant and everything was just perfect, or so I thought.  When Colin was born, I thought we deviated off of that "perfect road" but have since realized that the road less traveled is perfect just the way it is.  

What an awesome night!

Wednesday, November 14, 2012


I couldn't seem to form an organized post, but instead, have a lot of random thoughts running through my mind.  

- I can't get over the resiliency of kids in dealing with something as big as what this area has gone through in the past few weeks.  We were all back to school on Monday after being off for 2 weeks.  I have several students who have lost everything, including their materials for my class, and yet, shrug it off as though everything is ok.  I had my students write a few sentences on the first day back describing their own experiences (wondering who I need to worry about in terms of getting some supplies) and the ones that lost everything and staying somewhere new (some in a hotel, one in a basement "it's carpeted", and others with many other family members in small homes) ALL wrote that their family was ok and they were doing well before telling me that they didn't have any of their school supplies any longer.  Amazing.

- Although Colin is transitioning REALLY well to being back to school and attending a new/old daycare again, he still seems "off" and has been really whiny (particularly in the morning).  At times, he seems to get frustrated easily (most often directed at Kailey) and will scream NO! when he is really unhappy with something.  

- We have been trying a new routine again at bedtime which started this past weekend to get Colin back on track for school again.  So far, it seems to be working really well and I also hope to incorporate some pictures on a communication board, which I have been working on.  The way we have it structured now is that when Kailey goes to bed at 7:30, we give Colin the Ipad to play with.  We set the alarm for 8:00 and show him the sound before he starts.  We tell him that when he hears the sound, it's time for bed.  Then, he gets his vitamin, goes potty, brushes his teeth (well, sort of), reads a book in bed with us, and then I explain what he will do the next day (seeing his teacher, riding the bus, etc.), kiss him goodnight, and then leave.  So far, the first few nights he was only getting out of bed once, but tonight he didn't get out at all!

- Potty training has been tough to say the least.  For the most part, Colin will go when we put him on it, however, there is no initiation on his part to go or even tell us that he has to go.  If we push more and make him go really often, he fights it as much as he can.  Right now we have him on a schedule of specific times he goes during the day, but it's not enough to prevent him from going in his diaper.  We halted potty training during the 2 weeks after Sandy because he was having a hard time.  We just feel like we are in a difficult place without making any progress.  The potty is he sitting on in this picture is great! It's the highest shield I have come across yet and seems to be more comfortable for him.  I got it at Target for $12 and it's called the Wee Potty (or something like that).  

- I just got a call today about finally scheduling feeding therapy, so we will see if we can add that to the mix to work towards a resolution!  

Monday, November 12, 2012

Feeling Happy!

This was the sort of weekend we needed to boost spirits and feel like things were normal again.  As I have mentioned before, we were having some major issues with Colin and going to sleep at night, however, once he was withdrawn from the old daycare, things amazingly improved significantly.  We spent a lot of time out in the fresh air and with family this weekend, so it was really nice to regroup and get ready to return to our normal routines again.  The only thing that was missing this weekend was Daddy because he was working a lot.

There was a stretch of time when it was actually more frustrating to go to the park with the kids because Kailey was not quite walking yet and Colin wasn't there yet.  I would spend a lot of time carrying them and lifting along the different apparatuses and they didn't seem to enjoy it either.  However, it's been a lot of fun now because they love going up and down the slide and really just need supervision to get where they want to be.  

I was really nervous about how last night was going to go at bedtime because it had been such a disaster and I needed Colin to go to bed at a decent time since he had to get up and get on the bus this morning.  However, I worked really hard to establish his old routine again and was explaining things along every step of the way.  When he was a little upset in bed, I explained to him that he was going back to school on the bus to see Miss Liz (the smile was so big!) and then was going to be going to school with Kailey again (even bigger smile!).  Although he can't communicate well in terms of his expressive language, I think we often take for granted how much he understands receptively.  It's amazing how "easy" bedtime was once he knew what was coming next.  I can only hope tonight is just as "easy"!

Excited to be going back to the Growing Tree with all of his friends and original teachers!
A little birdy MAY have taken this for me to show me Kailey and Colin together again at school!