Friday, February 19, 2010

Just one of "those" days...

Today was Gabe's Valentine's Party (rescheduled from last week's blizzard).  I was always excited about class parties when Gabe was in PPCD because it involved his preschool classmates only and his class was made up of children with a variety of special needs.  I felt "safe" there with other children that had their own unique set of challenges and parents who understood my own son's differences.  It was a safe place for both of us.  Things are very different this year in Kindergarten.  Even though Gabe spends a large part of his day in a specialized classroom that resembles the make up of his PPCD classroom, his class parties are with his general education class.  

I was very nervous when I attended the Winter party in December.  What would I walk into?  Do the kids like Gabe or laugh at him?  How will the parents react to Gabe?  Will I have to explain to everyone about his special needs or will it be on of "those" days where it is perfectly clear through his behaviors?  Will my heart be able to stand seeing my precious boy amongst his typical peers?  (you know, that moment when the blinders are ripped off and the gap between his developmental age and theirs becomes glaringly obvious)  

I was pleasantly surprised that the Winter Party went well!  Thankfully, there was too much chaos for Gabe's behaviors and verbal stimming to be highlighted.  I didn't run into that moment when I felt I had to explain "the situation" to any of the parents.  However the best part was the reaction of several of the other students to Gabe.  Gabe paid no attention to any of the activities or craft projects and instead did his "thing."  He pulled out several bins of magnetic "sight words" and found magnetic surfaces throughout the classroom and lined up all of the words.  At first, I debated whether I should stop him immediately in order to try to "appear normal," but then I decided to let him do his thing and at least be a part of the party as opposed to the other option of leaving early due to a severe meltdown.  I was shocked when several boys approached him and asked him if they could help him read the words.  After a few minutes of hearing Gabe name every single word (even quite a few that they did not know), they changed from helping him read to helping him take down the words and find new bins.  They were interacting with Gabe and he was tolerating them, so it was a HUGE victory for me!  When the party was over, his classmates lined up and left to go to art.  I had to take Gabe back to his LIFT class and so we waited for the others to leave first.  My heart melted when several of the students said, "Bye, Gabe!"  I left on a high.  I was so excited to see the children acknowledging my sweet boy (even if he seemed completely oblivious).  

Well, that was not how things went today.  Today at the Valentine's party, the children didn't acknowledge Gabe for the most part, but he certainly did not pay attention to them either.  He was completely obsessed with his candy and goody bags and it was futile to attempt to get him involved  in anything else.  After a very short time, he became anxious and was experiencing severe sound sensitivity so we returned to his LIFT class.  

I decided to hang around and have lunch in the cafeteria where Gabe continued to ignore everyone around him while the other students cut up with one another, laughed and had a good time.  I walked with Gabe to the lunch line to buy a drink and Gabe kept saying, "Loud! Loud!"  The boy in front of us in line ignored Gabe and looked directly at me and said, "Why is he saying that so much and why is he acting like that?"  A very large, sharp knife went straight into my heart.  I kept a smile on my face, despite the aching inside and cheerfully explained Gabe's sound sensitivity.  The same boy then looked at Gabe and said, "Hey!  Stop eating the juice carton!"  The knife dug in a little deeper and I somehow kept a smile on my face, but I was indeed wounded.  Then  the boys in front of Gabe started hitting each other playfully and laughing.  Gabe noticed this and started laughing and got closer to the group of boys.  He then grabbed onto the same boy that was just yelling at him to stop eating the juice carton and cuddled up to this boy.  Boys his age do not "cuddle" with one another and certainly do not understand a child their same age doing so with them.  It's not "normal."  I have always boasted about how blessed I am that Gabe has always been so affectionate and loved to cuddle with me.  It has always been a great bonding experience for me since I have yet to have a real conversation with my son, but he always makes my heart smile when  he jumps into my lap and wraps those sweet arms around me!  In this moment in the lunch line, he was happy and excited around these other little boys and he reacted in the only way he knows how... hug them tightly and snuggle in real close.  My heart no longer had stab wounds because by this time it was completely broken.  

Lunch was winding down, but since it is Friday, we still have time for one more thing... ice cream!  It's ice cream day!  Hooray!  (sarcasm)  My son is on a special diet that we believe strongly in since it was the piece of the puzzle that brought forth language!  My son went from a few one word demands to greatly increasing his vocabulary and even stringing together three word sentences once we took wheat and dairy out of his diet.  This "special" diet has not been easy on anyone, but since it coincided with some dramatic gains, we refuse to give into convenience and drop the diet.  So I escort Gabe to the ice cream line and when it is our turn, I ask the mom in charge if the "ice cream treat" has dairy.  She responds that she does not know.  I then ask for a regular Popsicle since I know that they are dairy free and she responds that this is the only option they offer the Kindergartners. I politely explained that Gabe had a dairy allergy and would need an alternative (which I KNOW they have).  She then responds, "Well if we give him that, then the other students may also want something different."  She looked at me like she couldn't believe I would dare do that to the other poor Kindergartners.  I have CLEARLY explained that my son can not have dairy.  Is she seriously asking my son to be the one to sit and watch the others enjoy their ice cream while he once again goes without?  I wanted to scream back at her, "Do you think maybe MY child wants what the other kids have just once or how about every single day?  He would LOVE to be able to eat whatever he wants like them, be able to communicate and talk like them, not have hours of therapy a day and maybe attend little league and soccer practice like them!?!"  This is what I wanted to scream at this lady, but I didn't.  I had a literal "come to Jesus moment" within myself and silently repeated, "Forgive her for she knows not what she does."  I then simply responded, "My child is allergic to dairy and will need an alternative, even if that means I need to pay more."  She finally complied.  

What a day!  These are the hard days.  The days when I stop riding the high of all of the great progress we have seen recently and instead find myself reeling from the sharp slap in the face by reality.  I am not diminishing the awesome progress we have seen lately, just seeing that despite these gains, we are light years from where I want to be at this moment.  I am sad for my baby boy.  Who am I kidding?  I am no martyr... I am sad for me!  My heart is weary this evening, but I know that when I am blessed tomorrow with my son's sweet, tight, joyful hugs, I will find a fresh perspective.  He is my inspiration.  He doesn't ever wallow in pity and he doesn't judge others by their differences.  He instead embraces life with pure, innocent, infectious joy that I wish we could all experience.  

1 comment:

  1. I read your post because I receive google alerts when a blogger posts the words: sight word. Honestly, it brought me to tears.

    I admired how you handled the ice cream situation as well as your outlook on life!

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