Sunday, January 13, 2013

One of those days...

Today was one of those days where I was reminded of Wolf-Hirschhorn Syndrome and it hit me hard.  Today Dylan was invited to a birthday party of a boy in his class.  Dylan attends a pre-school with an inclusion program where 20% of the children have special needs and 80% are typical.  This was a "typical" party, his first that he has ever been invited to, other than close friends and family.  I was excited to take him, Dylan was excited to put on his jacket and shoes because he knew that we were going somewhere.  The moment I walked in I already felt sad.  It was at one of those indoor play places and kids were running everywhere.  They had bouncy houses,slides,toys and things to climb on - mostly things that were way too advanced for my boy.  So amongst all the craziness I found a spot on the carpet for my little man and we played - and by playing I mean I handed him a toy that he would pick up and look at for a minute then throw and I would put it back in his lap and we would repeat this over and over until he got tired of it.

He didn't interact with any of the other children.  His classmates would come by and say "hi Dylan!" and I would lift his arm up to wave and he would turn his head. 

I know that he was doing this because it was most likely over stimulating for him but still, it made me sad.  I know that Dylan will never be "normal" or "typical" and no amount of therapy will "fix" him but I wanted so much today to see him running around with his classmates and jumping in the bouncy house, heck I wanted to see him sitting at the table with the rest of group to sing "Happy Birthday" but instead he sat in his stroller at the end of the table with me. 

I shed a tear tonight for what could have been, for what I had hoped for, but then was reminded by my mom that Dylan isn't sad that he has Wolf-Hirschhorn Syndrome.  He was happy to go somewhere new, he was happy that we got in the car, he was happy to be with me - his crazy dancing, clapping, made-up-song singing mom who can make him smile from ear to ear. 


  1. I can totally relate. I don't like birthday parties much because I always feel so so sad. But like Dylan, Ryley always has a great time going, even when I have to help him do everything, even when he can't eat the party food. And the main reason is because he is around people. And people are his favourite thing. Much love xox

  2. This made me cry. I can so relate. I do fine when we are at home or with other adults, but it's always hard to see Frank around other kids. We go to a playgroup once a week, and my five year old plays with the other kids while Frank sits on my lap. I've been wondering whether I'll continue to go next year when the five year old is in kindergarten. Will I attend with just Frank knowing that he won't play? I really don't know yet.

  3. I SO relate to those feelings. Even when I take Kaylee with me to accompany Ryan to a party, I end up feeling sad, because there are other siblings there who are younger and able to do what Kaylee cannot-- and may never be able-- to do. I cry often for what might have been, and although I agree with your mom that Dylan is not sad that he has Wolf Hirschhorn Syndrome, there are days when I look at Kaylee as she watches her brother dance or play and think that she is aware that she cannot run or play with him-- and she would like to; we both feel trapped physically and emotionally. I had to stop taking Ryan to gymnastics because the time interfered with Kaylee's bus schedule (she starts school on Wednesday!!), but I didn't even look for a later time to replace it. Why? Because it is so hard for me to be in a gym with so many little girls in their leotards, doing what I had dreamed of for my daughter. I have been told that it will get easier as time goes on, but I wonder...I fear that I will always be painfully aware of what she is not able to do, instead of celebrating what she can. I know that doesn't say much about me, but I went through the same series of emotions when I would take my older daughter to b-day parties; instead of being on the floor, she was following me and the other adults around, carrying decks of cards and looking bored instead of playing with the kids. Not having imagination makes it really hard to relate to others when you're young. Although she didn't "look" different, it was painfully obvious to every parent there that something was "off" about her, and I often felt the need to explain it: "She's Autistic." Then the mothers understood, but really couldn't relate. It has been years of feeling like the outsider parent. I would guess that as Dylan ages, he will be in more self-contained classrooms with children with needs similar to his own, and that it will be a different experience attending those parties. At least, it is the way it was for me. On another note-- Dylan is quite the looker! He has matured so much, and he is so photogenic; if we lived in CA, Kaylee would definitely be cuddling up to him! :)

  4. This made me cry!! I am so sorry for you. I love what your mom said and that reminded me not to be sorry for Dylan, because he was happy. He is so very lucky to have you as a mom, a singing, dancing and clapping mom!! I need to really remember your mom's words. They are very wise. Thanks for sharing. Sending love your way friend, as always.

  5. I too can relate, Kristy... And I try to tell myself at times like this that our kids are not bothered by whatever the situation - is it because they cannot participate in the party activity as everyone, or because they cannot participate in classroom activities because they are different. My heart breaks when I see Denise being ignored by everyone else at school because she is who she is, but on the other hand, she goes to school with such enthusiasm, she doesn't seem at all sad, or "getting" it that she's not treated equal. She is happy. Happy to be around her classmates, happy to be around people in general. So that should be enough I guess. Sometimes it isn't though, and I so get you.

    Big hugs, mama, keep singing and clapping, and making your little man happy.

  6. I know its hard, most for the mothers, am a proud father of my son Alan, which has wolf hirschhorn, I know its hard to see other kids with the same age than yours doing diferents things, and yes, we as parents get sad and all, BUT, when I turn around and see Alan , how happy he gets, its priceless, so I"ll say, keep taking Dylan to all the party's, I always see Dylan's progress and its amazing, he is been a huge inspiration for me and my wife, don't get sad, be proud, Dylan its amazing, whrn you start feeling sad, look at him, because I can tell, that he is one happy kid, that deserve to go to all the party's in the world, god bless you all


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