May Your Days Be Merry

"What if Christmas , he thought, doesn't come from a store. What if Christmas, PERHAPS, means a little bit more."

-Dr. Seuss, The Grinch

 

Wishing You a Very Merry Christmas and Happy New Year!

The Croley's

A Very Special Gift

I often tease that I need therapy. My family has asked what I would like for Christmas and jokingly I have said “a therapist.” Truth is that I wonder with each new battle we face, is this the year….. The year I finally make time to go to therapy? Sometimes I wonder how I have made it this long without going and pouring my heart out to a professional psychologist. What stands in the way is time. I don’t have much of it and if I could somehow find more I have several other things that I could fill the time with. Don’t get me wrong – I do believe that therapy/counseling can be very beneficial. I think that part of me holds back because I would probably end up in a room crying – not talking – then mad that I cried and couldn’t talk. So I avoid it.

A few years ago I lost a very strong supporter of mine. She always made me feel… well, perfect. I could tell her anything and she would listen. If anything was going on she was one of the first people to know. We never went a day without talking to each other. She loved me fiercely and taught me how to love just the same. My Grandma Nancy was much more to me than just a grandmother. She was my friend and my confidant. I have never lost someone that years later I still think of daily. Every time we face a new battle or something amazing has happened, I think if I could just call her. If I could just talk to her – if only heaven had a phone.
Over the last month I have done what I always do, I struggle emotionally and then miss her even more. After the heartbreaking play incident, I thought of her as always. I talked to Matt about how I missed her as we drove to my parent’s for Thanksgiving. After we were there for a while I told my Dad the same. After a few minutes my family handed me a bag… An early Birthday present since mine was the very next day. In that bag there was a frame with an index card with very familiar handwriting….

“Accept what is, let go of what was and have faith in what will be.”

I cannot begin to describe the chills I got when I read this, I immediately new her handwriting. Then I hear my parents’ side of the story. Just a few days before my mom had been watching the boys and my niece. They were piling papers on Bryce as he sat in his chair. They were wild and pushing my Mom’s patience a bit. As she was cleaning up all the paper, she noticed Bryce had one clenched in his fist. She took it and immediately saw my Grandmother’s writing. She couldn’t believe it – no one in our family had seen this card before. She asked Cohen where it came from and he refused to say anything other than – he didn’t do it and put blame on his cousin. My mom told him he wasn’t in trouble, she just wanted to know and he just shook his head. Right away my Mom knew that message was meant for me. After the struggles we were in the midst of, it was clear.

There was one dear friend of my Grandmother’s that knew how special our relationship had been. My Grandmother reached out to her when I was a freshman at college. She worked in the Psychology Department and since (at that time) that was my major she asked her to help me find a job. I wouldn’t know it at the time and my Grandmother didn’t know either but this dear friend worked with her staff to hire me when there wasn’t a position available. I thought of her that day – wanting to share this story with her. I am not sure why other than the fact that she realized our relationship was so special and I wanted to tell her what had happened.

For several years I hadn’t spoken to Leva, both our lives were being complicated by different circumstances. Thanksgiving evening I called my Dad again, I was still in shock over my little framed note and its message. I told Dad on the phone that I wanted to call Leva (as strange as that may be) and share the story with her. At that very moment Leva left a comment on my Facebook which isn’t something that happens frequently. Once again I was stunned and sent her a message asking for her phone number.

We connected a few days later which was emotional – I think – for both of us. We promised to keep in touch and it was such a wonderful feeling when I got off the phone. I know people say that our loved ones never really leave us. That they are watching out for us from up above. I haven’t always believed that everything happens for a reason. My faith isn’t as always strong as it should be. But this….. This was not a coincidence. This was so much more than could be explained.

I honestly believe that my Grandmother knew how much I needed her and I think that she made sure to let me know that even in death, she has never left me. I also believe that she wanted Leva and I to reconnect. It isn’t clear to me why but I know now that there is a reason.

When EXCLUSION makes a Public Appearance

Remember that blog post from August – the last one that I have been able to write because it has been so hard to deal with what we have going on now. In case you missed it and want to catch up Click Here. The school transition has been challenging for Matt and I. It was always a very strong belief that we keep Bryce in the general classroom as much as possible.

As we headed further into the school year it would be obvious that the general classroom participation was almost non-existent. I received zero communication from the regular classroom teacher. A nightly reading log required of all students was never checked for Bryce, but Cohen’s was always checked. Actually Cohen’s log would be graded, highlighted and marked with a sticker each time. The teacher also made sure she pointed out if we missed a night of reading. Bryce’s has never been checked. Each student also has a behavior sheet, Bryce never did. Cohen’s folder would always come home with items he completed during that day, centers he did that week…. A new library book each week… Bryce never brought home anything – for two weeks he didn’t have a library book. We had brought this up in a Parent/Teacher Conference and the ”Resource” teacher took each concern and made changes. She was the only one.

Outside of when Bryce is with the “Resource” teacher, I receive zero communication. I do not know what he does in the general classroom – if he does anything at all. I can tell you that there were at least two classroom parties that Bryce was not part of. So when we got an email saying there would be a school play; that all of Kindergarten would perform on Grandparent’s Day I had many reservations. It would be a “speaking play” where each child would be given a line to memorize. No child would be speaking alone but instead in small groups. Matt and I talked about whether they would actually have a part in the play for Bryce. I specifically told Matt that if Bryce doesn’t get something sent home when Cohen does I was going to make a call. So the day I opened their folder and they both had something for the play, I was pleasantly surprised. I checked Cohen’s first – he was to memorize a line that was three words long – whew… Not so hard. We can handle that.

Next I opened Bryce’s folder, he had a line to memorize that was at very least 7 plus words.

Let me pause right there…………………………

If you don’t know Bryce you wouldn’t know why this would be a problem. Bryce is nonverbal. Bryce does not speak. Anyone that knows Bryce – would know this about him.

I looked in his Communication log to see if I had any note from the teacher but there was nothing. Nothing else except the instruction to “help your child memorize this at home.” I honestly couldn’t believe that no thought had been given to this in the least. Matt and I decided to make it work. We had a recordable switch that we would use so that Bryce could still participate. Please note that no one at school knew that we had this at home.

I wasn’t thrilled about this option – Matt would have to speak the line but then once Bryce hit it there would be a man’s voice that would blast out. But we went with it because we didn’t know what else to do. We sent that switch to school so that he could practice with his peers when they rehearsed at school. However, it would become clear very quick that Bryce was not participating in the rehearsals. Cohen came home complaining about the play; he was tired of practicing and he didn’t want to practice anymore. He said if Bryce doesn’t have to then why should he. I was furious.

The very next day I called the Resource teacher to ask about Bryce’s participation in the play rehearsals, which she couldn’t speak to because she had not been the one to attend with him. Instead a para-educator had been with him. I also brought up other concerns (stated above) that we had moved past but this was all starting to be too much. She assured me she would find out if he was practicing and would also address my other concerns in regard to the general classroom participation. This conversation took place on Thursday before the play scheduled for Tuesday of the following week.

Then comes the big day – Grandparent’s Day and the day of the big play…. Both Grandma’s got to attend and updated me on how it went. Cohen did great! He and three other boys screamed their line. I was shocked because Cohen can be backward especially in front of a crowd. A bit later in the play was Bryce’s turn. An aide pushed him on stage and had his button in her hand. There were three other kids on stage with Bryce. Then comes the big moment….. See the picture below.

Do you see what is wrong with this picture? Bryce is looking at the button that is being placed in front of the other student. Do you see Bryce raising his arm? Let it sink in for just a moment.

It was very obvious that this was intentional; that this was planned, the child hitting the button could speak and the child in the wheelchair cannot. So what explanation could there be for this to have happened. Knowing how my conversation went with school just days before, my Mom called to let me know what happened. I was devastated. I was heartbroken. I was furious. My sweet Bryce had a moment stolen from him (without a decision or choice) and for his very first play. I absolutely could not believe it, especially after the conversation I had just had stating that I was upset he wasn’t practicing.

After having several conversations with the members of the school staff, I learned that a decision was made to not present the button to Bryce since he was “inconsistent” at practice. I was informed that they had good intentions and that they did not want to single Bryce out in front of everyone.

Let me make one thing very clear. What they did to Bryce that day is in no way different than a verbal child getting stage fright every other practice, sometimes remembering his line and sometimes not. Then choosing to have that child not participate – removing the opportunity for that child because he didn’t practice well…. This is not Broadway – this is not up for any award or prize. This was a Kindergarten play that no matter what any child did would be just as cute if every line was perfect or if you couldn’t understand anything that they said. I am pretty sure that the audience full of Grandparents would have been happy with either result. Where was that one person that stood up and said that this is NOT okay? I cannot believe that not one person stood up for him…. or at very least say that the parents should be part of this decision.

I was told in one of my conversations that “they” thought I would be happy that Bryce was being included like all other students. Then I was asked what I would have like to see happen. To address both – Bryce was involved in the only way that he could NOT participate. Even when his parents came up with a plan to make it work; a plan that everyone seemed fine with… he was still shunned. Bryce should have been given the opportunity to press the button and if he chose not to hit it then he was at very least given an opportunity. It would have been his decision and no one would have been upset if he chose not hit it.

I would have like to have seen a bit of consideration. Consideration of the fact that Bryce is non-verbal and the only way to participate was to speak a line. He could have rang a bell as the play started to get everyone’s attention. He could have held up a sign with a line written on it. There was absolutely ZERO consideration or thought put into this. I am appalled at the entire situation. To know that this is not the one and only problem we have had (but this one sure takes the cake) and we have only made it half way through Kindergarten makes me sick. There is absolutely nothing that can change this now and we need to accept it and move on. But I make one promise… we will make sure this doesn’t happen to him or any other child ever again.

All we ever wanted was for Bryce to be included. We do our very best to include him any way that we can. When it came to this play we were determined to make it work so that he had his little part in it. I still cannot believe that we had to transfer to this school because it was this place that would provide the least restrictive environment for him…. We couldn’t have him any more restricted than he is currently. Next year we will leave that school, my boys will no longer be part of that school and we will go back home to where he was accepted for two years. Back to the school where many of the staff became like family, where they never lacked in the department of communication. I was told that a handicap child (specifically one in a wheelchair) has never completed elementary school at Grants Lick. I think it is time to pave a way to change that. What better person for the job than my Bryce Man!



in•clude
verb \in-ˈklüd\
: to have (someone or something) as part of a group or total : to contain (someone or something) in a group or as a part of something
: to make (someone or something) a part of something

ex•clude
verb \iks-ˈklüd\
: to prevent (someone) from doing something or being a part of a group
: to leave out (something) : to not include (something)
: to think that (something, such as a possibility) is not worth attention

Source
http://www.merriam-webster.com/dictionary/include