31 for 21: Highlights and Low-lights (16)

Just with anything in life, parenting certainly has it's really great moments, and those that make you wish you could retreat to your little hole somewhere and pretend it's not happening, that there would be some magic fix to the problem and you wouldn't have to deal with it.  

Today was one of those days that in just a short amount of time, we experienced both ends of the spectrum.  

While I was getting ready for the day at school today, Chris sent me the following picture with this exciting note attached saying "Colin walked up to her and said goodbye and kissed her!!".  He later told me it was one of the greatest moments he has experienced so far as a parent because it was completely unprompted and just showed how much he loves his sister.  It was really awesome as we live for these kinds of special moments.  

Just a few hours later, I went to school to pick up Colin from his private preschool program (daycare) and things were to significantly change.  When Colin started preschool last year, we temporarily had some college students coming to get him off of the bus because we only had a short amount of time left in the school year.  However, since his original school is just under 3 miles (exactly) out of district, the public school will technically not bus him there causing us to need to find a location for him in district.  There were not many options in our town that fit our list in terms of what we want in a daycare facility.  Colin really loved his previous school and was really a part of it while he was there.  We had a really time hard with the transition in finding a new daycare facility because we didn't know anyone there and as with anything, was tough because it was a change.  

However, we were really open minded and knew that with time, we would all adjust.  It did have some really great qualities that we did really like.  There have been some things along the way that haven't necessarily sat right with Chris and I, one of which I spoke to the owner about today.  They are things that I have questioned whether or not it's just me or if they are legitimate causes for concern.

After my discussion, I went to get Colin from the playground and found his teacher walking unhappily towards me holding his hand.  She informed me that Colin bit another student again today (you may recall my post from last week).  I asked her what the circumstances were this time and she told me it was unprompted.  Ugh. I just wanted to take Colin and run.  The incident report said that he just leaned over and bit the student while they were sitting on the couch and she caught the second attempt.  

So, we got in the car and I asked Colin about the biting incident and he just started crying.  I asked if we bite our friends and I got a "nooooo" a midst all of the tears.  There are so many specifics that I don't think would be appropriate to get into in this post, but my Mommy radar is really beeping right now that something isn't right.  I am not in any way making excuses for Colin's behavior because in no way do I want him thinking that biting is the answer.  In fact, I handled the situation by talking with Colin, not allowing him to watch his shows all afternoon until now despite several requests (which came significantly after baths and dinner) and Colin will help write another apology note before bed.  But, the only place Colin has bit has been when he has been there at this place when we haven't even had the slightest issue with behavior in his preschool program.  Considering the rough relationship with his sister at times, he has only bit her once that I can recall in many months (and happened months ago) and of all people, you would think she would get it the worst if if was an all around issue.  I also feel that we would  be experiencing this as an overall problem in different locations if this was a general issue.

When asking him about it, I get this...

...and this (the hands in the mouth are self-soothing)...

...and the hands over the face with tears.

...which continue until....

I remind him that I love him.  

So today, I cried.  My instincts are telling me that something or someone is causing his frustration and instead of handling it with words or other kinds of actions, he has found that biting resolves his issue (again, not ok).  I am crying because I fear that with this being the second time, people are beginning to think that he is doing this because he has Down Syndrome, because there is something wrong and my baby can't tell me what it is, and because I don't know how to fix this right now.  

There are many things Chris and I need to consider and try to find a way to resolve this because as Colin learns how to communicate, he can not think that biting is an acceptable form of communication.  However, I really feel that there is an underlying cause to this that we can hopefully resolve.  Soon.  This mommy does not want to shed any more tears over the stress of this...

Comments appreciated...

31 for 21: Eating Habits Addendum (15)

There were a couple of things about Colin's eating habits that I had wanted to mention and didn't yesterday because I simply forgot about it.  In addition, I had a comment on the blog yesterday that was a question I quickly wanted to address....

Although it is clear that Colin has some "issues" when it comes to eating (I really wish I knew the TRUE issues), we do think that now at this age there are also some behavioral issues that come with meal times.  When we recently had our feeding assessment, the therapist suggested that one of the goals we work towards is simply having Colin "visually" tolerate our table food on the table near him.  Although we are doing nothing else with the food, he cannot handle the food being too close to him.  He knows we aren't going to make him try any, but still doesn't want it near him.  Sometimes this has even been food that he has liked in the past like pancakes or pizza!

Another thing the therapist suggested that we are working on is slowly adding some texture in the form of finely grounded graham cracker to his pudding/yogurt snacks.  We started this at school where he is generally more tolerant of some changes and has been going well so far.  It is only a small amount, but we will slowly increase through time with the hopes that he will tolerate some of this increased texture.  

One of the questions that I was asked yesterday was regarding the Stage 3 baby food.  Before we had heard any of the "research" surrounding this type of food, we felt that there was something "up" with the fact that Colin didn't have any interest.  Although I haven't specifically read any of these articles (I am in the process of seeking some of these out), several of our therapists spoke to us about having come across this research in their studies.  Some of the research that stage 3 baby food is too confusing for babies and had even recommended skipping it altogether.  The research says that babies are generally used to the purees and then you add in lumps to it which can confuse the taste buds of the kids.  We noticed significant changes in feeding when we introduced this food.  It was suggested that we instead, skip right to table food.  If anyone has seen research like this, can you please lead me in the direction you saw it? As soon as I locate some, I will be sure to share!

We will keep trudging along with the hopes that one day, we will see some progress not only for us, but for Colin!

31 for 21: Eating Habits (14)

It's been no secret around here that one of the biggest challenges we have faced since Colin was born has been feeding issues.  Although we were fortunate that Colin didn't have any major medical issues at birth, he did have to stay an extra night at the hospital because he wasn't feeding on the bottle very well.  For months it was a struggle to get him to drink a certain amount of formula which had to be done from a specific kind of nipple (I will never feel the same about those crooked Nuk nipples! and I felt like we were counting cc's and ounces for so long!) and when we finally started to overcome that we started working on the straw which also took a long time for him to accomplish.  

However, shockingly, when we started with the cereal and pureed fruits and vegetables he did awesome with it.  We never had any issues during that time period and it was actually quite nice (aside from trying to get him to drink his milk through a regular straw).  

However, when we started to switch to the Stage 3 foods (I WISH I knew some of the research that is now available regarding this sort of textured food) the fight began.  At the same time, we were also trying to incorporate table foods and everything was spit out through raspberries.  Unlike most babies/toddlers, Colin always refused puffs, yogurt melts, and the like.  Even from the beginning of the table food stage, Colin would only eat cottage cheese, apple sauce and pastina (after much effort) with pureed vegetables in it.  

Throughout most of Colin's 1st and 2nd year we spent getting feeding evaluations and feeding therapy through St. Joseph's feeding clinic in North Jersey.  Although I feel like we did get some good things out of there in terms of helping the inner struggles (reflux and constipation), we never really saw any progress in what went in Colin's mouth.  We were really uncomfortable for a long time because we used to have to force food into his mouth a certain way and we were so religious about it that when I was home with Kailey as a newborn, I packed her up everyday and went over to Colin's school to "do the method" at lunch time (because I felt bad asking the teachers to do it). 

We've had stretches of time where he ate some new things like pancakes, which became a dinnertime staple but most of these stretches have been short.  In December last year, the pastina made a 2-day comeback and then Colin had strep throat and things were never the same again.  He's had bites of pizza and more recently lasagna, but we can't get anything to "stick".  We have cheered and airplained and jumped the food into his mouth, but we just can't make progress.  

We have cried over these feeding challenges and wanted to pull our hair out but finally have gotten to a place where we have accepted this part of Colin, but it has always sat uncomfortably in the back of our minds that we are not happy with this.  Although we feel that it has something to do with textures (NOTHING crunchy or hard solid), we don't feel that he is really a kid who has sensory issues because he can tolerate most things on his hands, in between his toes and IN his mouth (heck, this kid ate a TON of sand and comparable items this summer).  We have tried so many different things and foods but we just have not made significant progress.  

Every time we go somewhere, we need to make sure we have a bag packed with food for Colin as well as drinks he likes because aside from ice cream, there is not really anything we can get for him at a restaurant or someone's house.  Although this isn't by far the worst thing we could be doing, we have now experienced what it's like to have a child eat anything and actually chew the food that it's in her mouth (we still don't feel like Colin appropriately chews food) and we would love to get to some kind of place like that with Colin.  Just two weeks ago, we started the feeding evaluation at a new place that we have seen several other specialists in and were really happy with the woman in her approach.  She didn't really evaluate the eating the way we expected her to do, but she did get a very thorough history on him and shared with us the fact she doesn't believe in a forceful approach.  We are hoping that we will be starting feeding therapy 1x a week in the near future as long as scheduling and insurance issues can easily be resolved.  

Although we can tolerate his feeding issues now, we want to get to a place where there is SOME variety in Colin's meal because we are afraid that eventually, the cottage cheese will work itself back out.  My goal time period is to see changes in the next year...fingers crossed!

31 for 21: Proud (13)

It's not always easy on this journey to be in situations where it's clear the areas that your child is developmentally behind.  Compared to other kids his age, Colin  has always struggled with his gross motor skills and it took much longer to sit, crawl, and walk.  However, as time went by, it wasn't quite as hard as it was in the beginning to wait for these skills to be accomplished.  

These days we work really hard with Colin, but also, take the accomplishment of skills as they come.  We know that there are certain things that Colin may take a little bit longer with (although, not everything) and it's really ok because we now know that he will do them when he is ready.  We still can't get over this week that just over a year ago now, Colin stood up on his own for the first time and today he was jumping while clearing the ground!

I am aware that I am always in a hurry and in a rush because I feel like there is only so much time to do things...get things accomplished at work, make meals, clean, pick the kids up, fitting in running, completing tasks around the house, etc. However, I am thankful to have been given a reason to slow down and truly appreciate the "big" things in life.  There is never an accomplishment too small to celebrate around here because everything is reason for hoorays!

Chris and I are so proud of Colin for all of the things he has accomplished in his short 3 years of life.  He is one special little guy and we know that he has big things ahead for him.  Although we may have first felt differently when he was born in terms of what the future would hold, we have such high expectations for him in his life ahead.  We know that Colin can accomplish many things...

31 for 21: Happy Friday (12)

 Happy Friday everyone! This will be one short post from this mama who is utterly exhausted after this week! Enjoy your weekend! More to come...

31 for 21: Working Together (11)

"Some people come into our lives and quickly go.  Others stay for awhile and leave footprints on our hearts.  And we are never, ever the same."

There are lots of people who have been around to help us since Colin was born.  We are lucky to have our slew of family members, friends, therapists, teachers, etc. who have supported us in so many ways.  However, we wouldn't be where we are today if it wasn't for the fact that we are a team.  

We certainly have our days that are not perfect, but we work really hard to keep things running smoothly.  

We make sure that we do things as a family, we eat dinner together as often as we can, and we make sure our kids know just how much we love them...

Life is definitely not perfect around here which is evident in a somewhat messy house, or laundry that sits in a basket not put away (definitely my fault), but we are a family and sometimes just being together is all that matters.

There isn't anyone else I would rather spend this life with than my best friend...

The one that loves his family with all of his heart....

...and shows them every.single.day.

Life hasn't always been easy, and we've been thrown some challenges our way, but we have each other...

We work, because we work together....

31 for 21: About Preschool (10)

When it was time to start transitioning Colin into the public school preschool program, Chris and I were ready.  Although we really enjoyed the therapists that came to the house through Early Intervention, we thought Colin was ready to be in a more structured program with other kids.  Colin's attention span was decreasing through time since he was working in his own home, so we couldn't wait for him to get into school.  For us, it was also an exciting time because Colin was already familiar with a structured school setting since he had been attending from 6 months old and on.   

Picture day!!

Although the testing phase wasn't fun (it has never been fun), the rest of our easing into preschool has been a great one.  I have felt rather stressed along the way in terms of making decisions because sometimes it's really hard to know whether or not you are making the right one.  For a long time, Chris and I really wanted an inclusive program because we wanted him with his typical peers. However, the inclusive program was only for 2 hours a day and had up to 18 (or 20?) kids in the class with only one teacher and one paraprofessional.  The whole reason we were looking forward to preschool was so that Colin would get the attention he needed, and we didn't feel he would get it in that program.  

We decided on the 3 hour self-contained classroom which can have up to 12 kids (and right now there is even less!) with one teacher and two paraprofessionals.  The majority of the kids in the class are verbal (which was really what we wanted for Colin) and he is getting the attention he needs right now to improve on his communication skills, as well as the common preschool aged tasks that he should be able to complete.  For now, this is the best fit for Colin, but this is all with the idea in mind that we will eventually transition him into a more inclusive program as gets older and acquires these skills.

I feel that there is only so much research and talking to other people that you can do without just trying something out anyway.  No matter what we had decided, we still need to learn as we go and we will appropriately adjust if we find that something doesn't work for him.  We have been so happy with the progress we have seen Colin make so far in so many areas and absolutely love his "team" that work with him on a regular basis.  

Tonight, Colin's school had a fundraiser at the local McDonald's where some of the proceeds went towards the school itself.  The majority of the staff members were working there in some capacity and it was packed with a lot of families.  I can't even begin to tell you how good it feels to see how much the teachers, therapists, paraprofessionals, administrators, etc. love your child.  We are so thankful that Colin is in the right place for him!

Last week, Colin's physical therapist sent Chris and I this video during the day to show us what she had been working on with Colin and how excited she was for how well he was doing.  We're pretty lucky!