Monday, May 30, 2016

Unofficial Start to Summer

This weekend was our unofficial start to summer where we broke out the pool and spent some time at the beach. It was so nice to spend so much time together and I'm sad to temporarily see it end but excited at what's right around the corner.

Tuesday, May 24, 2016

We're Marching On...

I have had a really hard time lately finding the words to form blog posts that have been swirling around in my head. I suppose it's a bit of writer's block which is discouraging as this as always been an outlet for me. I have always believed in sharing our journey honestly but tastefully but doing this lately has been a challenge with all that we are going through again with Colin's education.

This year has been far different than last and we owe a portion of that to the general education teacher, special education teacher, and paraprofessional that have been working with him this year. They have believed in him, learned a lot about him and accepted him as a valuable member of their classroom. There were some logistics to figure out this year that were due to the settlement from last year but once everything was worked out and "settled" so to speak, things started to really fall into place and we have seen such great progress with Colin. He has made gains this year in areas that were not even attempted last year. We have had several meetings in which this progress was discussed that were mostly positive and incredibly encouraging.

However, once it came time to discuss placement for next year this progress was no longer good enough as the district wants to remove Colin from his least restrictive environment and place him in a class that is more restrictive for him. With there being no discussion or attempts at keeping him where he is, our only option was to file a petition for mediation which was held yesterday. It was over before it started as the district refuses to consider this as an option for Colin and obviously has the resources we don't to continue the process to court in front of a judge.

I can see how parents become hardened and changed because of this process. There is supposed to be a law that supports and protects Colin to learn alongside his non-disabled peers but many parents have to negotiate and fight to secure supports, services and placements for their children that are the most appropriate. When parents advocate for their children, they find themselves in situations like ourselves fighting against a district that is blatantly wrong in their actions and needing to hire advocates and attorneys to go through a lengthy court process to get what's right; to be supported in ways that they are entitled to.

Colin has done everything he could have possibly done this year to "prove" he is capable of being placed where he is alongside his non-disabled peers but it's still not good enough.  To say that I am discouraged is an understatement...

Sunday, May 15, 2016

NJM at Somerset Patriots in Support of SONJ

Every year, the company my dad works for (New Jersey Manufacturer's Insurance Company) holds two group outings that raise money for Special Olympics New Jersey. We love participating and it has also been fun because Colin's had some great opportunities to participate in throwing out the first pitch.

It's a little bit challenging for us because although we spend a lot of time talking about the day, and despite the fact Colin is really excited for the event, we know and anticipate that he has a hard time in getting on the field. He seems to be more nervous than ever lately when it comes to certain events, especially when there are variables that come into play. For example, he has a very big fear of mascots but leading up to the event he kept saying he was going to be really brave and give Sparky a high five. However, before we even got down there and he saw the mascots, he started getting "that look" and using his buzz word (shouting "poopies!" with translates to mean he wants to go to the bathroom even though he doesn't actually have to go). When we got on the field, he was initially thrashing and crying/screaming "poopies!" because he was so nervous and scared of the mascot. He also did this recently when I took him and Kailey to see Little Mermaid at my high school. Imagine a quiet, dark theater and him shouting "poopies!". Although we know that most people understand, it can still feel a little stressful for Chris and I in the moment because we know he will eventually be ok, but it's initially hard, especially when people are watching. However, Chris did bring up a good point on our way home; he knows exactly which buzz word to use that will make us react immediately (although we have smartened up over this one).

The funny thing was, as soon as he threw the first pitch, the first "person" he ran to was the mascot himself!

Elsa was also there throwing out the first pitch after Colin so they were excited to see her and pose with her.

Now that Cody is getting older and wanting to do what Colin and Kailey are doing, it's interesting to me to do these yearly events to see how much changes after a year. Other than when we were down on the field, he really was pretty good and we were able to sit in our seats more than we ever have before! It was such a fun night and we are thankful to NJM for all they do for Special Olympics NJ!

Thursday, May 5, 2016

Our Cod-Man

Our little man Cody is affectionately known as Cod-Man. Chris and I always said we weren't going to do nicknames but he lives up to his. Next week he will be reaching the 20 month mark and although he is not even 2 yet, he acts so much older than he is. He has been very challenging but mostly because he is so fiercely independent and just wants to do things like his big brother and sister. There are so many things that are hard but are also the same things that make us laugh.

He has a really funny personality as he totally knows what makes us laugh, what he's getting away with (or tries to get away with), and what is the complete opposite of what we want him to do.

What makes things very challenging right now is that he has to do things how he wants to, when he wants to, and completely independently. If you try to intervene, help, or change how he wants something he has a meltdown and purposely (usually) throws himself on the floor. We have learned to tune it out (as best as we can) because it's usually short lived. He decides when it's over and then carries on as if nothing every happened. Last week seemed to be a particularly rough week but now he's back to the funny and silly guy we love.

We have definitely learned to pick our battles with him. In the picture above, he was insistent on having a pickle for breakfast and I thought "who cares!" and so he had a pickle for breakfast. I wasn't up for a meltdown over a silly pickle.

A lot of what we have learned about Cody recently is that most of his meltdowns are due to the fact he wants to do everything Colin and Kailey are doing in the exact same way they are doing it. There a few moms that do drop off the same time I do and laugh most mornings as Cody struggles to walk in because he has his heavy backpack on his back (he insists!). Today he was starting to have a meltdown in the cart at Walmart trying to climb out of the front seat until I realized he simply wanted to be in the back with Colin and Kailey. Once I figured this out and put him there, he was completely and utterly happy.

He's got the best facial expressions and my most favorite one is the hamming it up cheese face.

He is completely unique and his own person and has learned so much because of Colin and Kailey.  Because of this, it sometimes feels like we are first time parents with him. He is doing things far earlier than the other two ever did. He has so much to say and seems to understand a lot of things. He is a little sponge soaking things up faster than we can keep up with.

A perfect example of HAVING to do EXACTLY what Colin and Kailey were doing.
We panicked recently because he figured out how to climb out of the crib onto the dresser. We temporarily turned the crib around but it was 4 nights of terrible meltdowns and taking 2 hours+ to go to sleep. I couldn't take it anymore so I turned the crib back and he hasn't tried again. We planned on making it a toddler bed once the summer came, but we just aren't ready for that yet.

We love him so much and are so thankful for all that he brings to our family (even when he makes things incredibly challenging). He has been the perfect bookend to our family and we just love him to pieces.