Challenges

I have noticed lately because of some glaringly obvious issues that everything with raising a child happens in "stages" or "phases".  For Colin, some of those stages stand out more than they do for Kailey and getting through them sometimes feels like big victories while other times you look back and realize you silently got out of it.  We've had the "he's not eating phase", "when will he walk? phase", "just go to bed! phase", "we're not going anywhere with the potty phase", and most recently (and most glaringly difficult) the "he can't effectively communicate so he's resorting to physical behaviors phase". 

 

 

Chris and I have been working really hard on managing Colin's more challenging behaviors because we feel it's important, no matter how many times it takes, for Colin to understand that even though it may be more difficult and frustrating for him, he still is expected to behave a certain way.  With most of the behaviors we have been dealing with, it is obvious to us that Colin understands that what he is doing is wrong because his typical response to reprimand is to drop his head down and say sorry.  It seems that in the moment, he often makes impulsive decisions to react simply because he doesn't have any other alternate way to do so.  He is monitored closely at school and we receive notes home whether or not he had "quiet hands" that day or not.  When these behaviors started, they were mainly when another student invaded his personal space and he could not communicate in any other way that it was too close.  His response was to push away.  We even saw some typical toddler behaviors during circle with pushing/poking. 

 

This year, these behaviors have grown and I am finding that the frustration level has significantly increased.  Not that I am justifying these behaviors in any way, but we find that his inappropriate responses are reflective of a situation he doesn't have words to use to handle in the moment.  That's not to say that he CAN'T communicate because he is vocal when there is something he doesn't like or want. 

 

Today was a particularly frustrating day because generally the response we got from both public and private school was negative.  Apparently, he cried getting on the bus in the afternoon, wouldn't get off at daycare, was basically dragged up to his classroom despite his protests, and cried in the doorway inconsolably.  He wouldn't lay down on his mat, wouldn't take a nap, threw a book, and was just not listening even to reprimand. 

 

I'll be honest, this phase is a tough one and today gave me a feeling of unease and dread in the pit of my stomach.  I know that we need to continue to work through because there is clearly something upsetting and frustrating Colin.  It saddens me that I can't ask Colin why he was so sad today because even when I do, he is unable to answer me.  I worry that the negative aspects of Colin's behavior are going to take away from all of the positive things that make him such a loving and awesome little boy because all everyone is going to see is the "boy who is misbehaving and giving us such a hard time".  I worry that even though some of it does, a lot of it will be attributed because he is a little boy with Down Syndrome and then THAT will stand out more than it should. 

 

Mostly, I worry because I don't have an answer to fix a problem that keeps creeping up on us every day.  I THINK I understand why Colin is acting this way but I can't just ask him and get an answer.  It hurts my heart that I can't do more, I can't swoop in at school and fix the situation, I can't work on it myself during the day, and I can't give any more ideas because nothing has been working.  Just hoping this phase starts to move forward in a more positive direction so we can find ourselves in a new phase...

Happy Birthday Chris!

Happy Birthday to the most important person to all of us here....we love you with all of our hearts and are so thankful for all you do for our family!! Enjoy your day Chris!

A Pretty Pixel

A couple of years ago, Chris and I stumbled across an awesome opportunity through this charity to choose a photographer from a list in our area to have a photo shoot done for Colin.  Through that, we found Terry at A Pretty Pixel and set up a time to meet her in a local park near her studio.  She spent a significant amount of time with us and we were in awe of the beautiful pictures she got of Colin, Kailey, and our family. 

 

 

She was extremely generous in that she donated her time, and most certainly her talents, to us that day.  Just the other day, we had the opportunity to go to her studio to take part in a mini photo shoot for Valentine's Day and were once again extremely happy with the photos that she got of the kids.  The hard part is going to be having to pick some out of all of the ones she got!

 

 

Colin was awesome in that he followed directions perfectly and totally knew exactly what he was doing in front of the camera. 



 

 

Kailey was a bit more stubborn at times, but totally bribable!  

 

Thanks, Terry...your pictures are awesome!

Updates

Things around here have been quite busy that every time I blink, it feels like another week has gone by.  I have had some moments where I have looked at our present challenges and successes and then have been able to glimpse back and see how far we have come.  I see little snippets here and there of progress and I always like the way it looks.  

 

 

We've had a very snowy winter so far, but unfortunately, the snow is coming on extremely cold days that even the kids don't want to play in (particularly Colin).  On our last snow day, I was trying to find some activities to keep them busy so we weren't watching TV all day and was pleasantly surprised to see that Colin was interested in arts and crafts again.  For the longest time, anything that required the use of his fingers or any sort of fine motor skill was something that he avoided, but lately, he has been doing really well with holding writing utensils.  The task of painting actually lasted a pretty long amount of time!

 

While I am still not where I want to be with both of them and the potty, we ARE seeing progress and I just have to take it as it comes.  To be honest, Kailey is the more frustrating one of the two because her want and need to use the potty comes and goes.  It seems as though she is better when we are not at home and is willing to tell me when we have to desperately find a potty somewhere (usually somewhere inconvenient).  Rewards aren't working that well with her but I think that if I just pick a weekend and become more strict with her, I may see some progress.  I just wish she would tell me more often!  Colin is doing really well for me  in that he is staying dry most of the day if he is with me.  He will tell me sporadically, which is better than the times he was never telling me before.  He still won't tell anyone at school, or anyone else for that matter, but the length of time he is staying dry for at school and at night is improving as well.    

 

Colin's communication is still coming along nicely, but he still needs lots of improvements when it comes to communicating something he wants or doesn't want when it comes to playing with friends.  Every once in awhile, we will get a note saying that he used his hands to communicate (taking away a toy, pushing, etc.) but overall, I think the behavior is better.  I know and understand why he is doing it (not that it makes it any better) but it at least makes me feel better to know that this should improve as his communication improves and as we continue to teach him that it's not ok to use his hands.  

Kailey is still drama as always, but is still incredibly sweet and loving in all of the other moments.  She cracks us up with her emerging personality and I'm starting to think she's turning out to be  a lot like daddy.  We just had a photo shoot recently at a Pretty Pixel for Valentine's day and I can't wait to share those pictures.  The kids were so good! 

I Have a Dream

Today in class I was discussing Martin Luther King, Jr. with my students and asked them why it's still important to talk about his legacy.  I got some of the answers you would expect that explained the history and what he is well known for.  I then asked them what the take home message was that everyone should walk away from today having learned, students AND adults.  I got some great responses like "you should never judge a book by a cover", "treat others as you want to be treated", "we are all created equal and all deserve the same rights", as well as others.  

 

 



 I typically talk about Colin the first week of school because I connect it to respect, how I like the class to go throughout the year, and my expectations of them to work hard no matter what their challenges are so they are familiar with Colin having Down Syndrome. 

 

Martin Luther King, Jr.'s legacy leaves a messages for all of us today, regardless of whether you are referring to ethnicity, religious background, developmental differences, or just simply personality differences.  It got me thinking that despite some of the challenges Colin himself faces, he is still entitled to the same education as his typical peers.  In all of my research about inclusion in school, I keep coming across the same answer.  The answer says that inclusion works for everyone because it teaches students to respect one another, work with another and it says when students are exposed to the same curriculum they ALL  have the ability to reach their potential. 

 

Many years ago, people with Down Syndrome were put it institutions because it was believed they couldn't learn.  However, the shift started to happen when parents believed in their children and found that by raising them just like their typical children, they had the same possibilities.  Today, we spend the first three years of our children's lives assisting them in attaining skills so that they are prepared to head to preschool at the age of 3.  I BELIEVE with all of my heart that when Colin is exposed to the same curriculum as his typical peers, he can be JUST as successful because he will discover what moves him.  I recently stumbled across this blog post and I was moved to tears.   This mom articulated the answers I have been looking for in my quest to figure out what's best for Colin in Kindergarten.  

 

As Colin's parents, Chris and I have a dream for Colin that he will cooperatively live and work in a society that respects him for WHO he is.  We were once scared of what the future would hold for Colin before Colin himself taught us what he is capable of.  We know that as long as we support Colin and give him everything he deserves, ANYTHING is possible. 

 

 

Thank you, Martin Luther King, Jr. for the legacy you have left behind.  



Behavior Modifications



After my obviously frustrated post the other day, I am feeling better after speaking with some of Colin's team.  Colin's teacher at school talked to the bus driver before Colin got on yesterday afternoon and spoke with the driver about the situation on the bus.  She told the teacher that she has a theory that what caused Colin to be upset and hit was that he had been sitting by the window and had been moved to the aisle seat.  While I am still not happy about the hitting, I feel a little bit better knowing there IS a potential reason and not just BECAUSE.  I also had felt some relief after spending so much time talking to Colin himself.  He is aware that it's wrong and brought in a note for his friend and they "hugged it out".  

 

 

 

I had also reached out to Colin's team about coming up with a plan for strategies in dealing with Colin's transition to therapy when he is involved in a preferred task.  His teacher suggested we have a meeting with the team to discuss this, so I also feel relieved that there is a plan in place to tackle this so they don't have to deal with it (hopefully) for the rest of the school year.  Feeling better mid-week than I had earlier in the week!

The Good and the Really NOT so Good

Yesterday, the Special Olympics of NJ hosted their annual Jingle all the Way Race which had been rescheduled from December due to inclement weather.  The race consists of a competitive 1.8 mile race or a fun run of the same length and typically in years past, I would participate in the competitive race.  However this year, Colin and I participated in the fun run together (Kailey was sidelined due to excessive  crying from an earlier fall which thankfully she regrouped from and Chris was traveling for work).  

 

 

I was SO PROUD of Colin because he ran/walk at LEAST one mile all by himself and for the rest of the time he rode on my back as I ran/walk carrying him.  He would only stay on my back for short periods of time and then ask to get back down and run again.  The poor thing was quite winded though!  He finished the race all by himself and ran across the finish line!  It was really exciting to watch!



 

 

 

 

My dad, my sister and her boyfriend participated too

We are also seeing some really nice progress in the past week in potty training (*gasp*, I can't believe I am saying that!).  Colin was dry all weekend long, even including the fact we were busy traveling all weekend to different events and had to use a lot of different bathrooms.  He is even increasing in the amount of times he is telling me he has to go which has been really encouraging. 

However, despite the fact we have seen some really great things this weekend, we have also been seeing some really NOT so good things.  Colin's behaviors have been challenging lately in that my frustration level is soaring because I feel like we are working hard on them, but still seeing them.   Colin is still pushing/hitting but it seems to only be in certain scenarios.  On one hand, I still feel it is primarily due to a lack of communication (can't effectively tell others when he doesn't want something, to stop doing something, or simply that he just doesn't want IT, whatever that may be) but I also thing it's because he's testing in some way.  I am trying to stay in constant communication with both schools and have not seen these behaviors at school much lately (just a minor pushing incident).  However, we found out today that Colin hit a friend on the bus both on Friday and today and according to the bus driver, was unprovoked. 

What's upsetting to me is that it's clear that Colin understands what he is doing is wrong.  Before I was made aware of the incident, Colin kept saying his friend's name that he hit when I got to school to pick him up.  After I knew what happened, I was able to more specifically ask questions and key words were coming out from him like "sad", "hit", "sorry".  His teacher put him in time out at school after getting off of the bus and when we got home, I put him in his room after talking to him about what he did and kept him there for awhile.  He was also not allowed to watch a show which is typically routine (when he asked for one I explained why he wasn't allowed to watch).  He helped me write an apology note and we talked about it again.  When Chris came home from work and we were sitting at the dinner table, Colin brought up the friend's name again (unprompted by either of us) which brought on another discussion from Daddy.  Because of this, we know he knows it's wrong, but can't understand why he is doing it. 

What upsets me the most is that it's ok for myself when we know Colin is going through a phase that we just have to deal with but it's harder when we have to worry about a behavior affecting someone else.  We will continue to push through and find ways to manage this (for example, putting Colin in his own seat on the bus) but it's still frustrating!