Wednesday, December 10, 2008

My Sweet, Sweet Boy

One of the hardest parts about having a child with complex needs is balancing that child's needs with those of siblings. C has been having a rough couple of weeks and so J has been slightly neglected the past few weeks. He was becoming moody and clingy and I KNEW I needed to make an effort to spend some one on one time with him. So today I sent C with his Respite worker and bundled J up to go off and see Santa.

It was the fastest trip ever. When we got to the mall there was a child just finishing and . . . J was next. He climbed right up on Santa's lap and told him he wants "Lego Batman" (a game for the Nintendo Ds he has been promised for his 5th Birthday) and a "Slingy" which of course is a "Slinky". Santa did a visible double take at that request and gave a little chuckle. They had quite a chat which I couldn't hear the details of -"It's personal mom" I was told when I enquired later. Of course I bought the picture package - he looked adorable and we had done the same for C. We are determined not to short change him on memories like these just because he's the youngest.

Then off we went to A&W for a "Cheese Hamburger" at the food court. I must say it did feel great giving him my undivided attention and basking in his 4 year old delight at every little happening. While standing in line waiting for his burger to be ready a man approached the cashier. His jacket was large and long on what was obviously a slight frame. He wore a sweater under it with the hood pulled over his head, effectively masking his face from us at the side.

When he approached, others waiting for their food moved away, an uncomfortable silence fell over the small crowd. He began to order, struggling to get his words out. His deep baratone voice moving up and down octaves loudly as he strained to get the words out. His body was in constant motion - not extreme but definately noticeable as he placed his order with the help of the lovely cashier who never let her smile waver and who pointed to the pictures on the board to make sure she had understood his request. As the young man paid for his meal I found myself filled with both happiness and sadness. Here before me stood someone who reminded me so much of my son. He was at the mall, shopping and ordering a meal on his own. Obviously very independent - nothing to indicate that he was anything other than self sufficient and happy.

But there was also the reaction of the other people, the assumption that he was someone to steer clear of. I was saddened by the reaction of others. I did feel a little sad that it was obviously so hard for him to verbally communicate. I worry about this for my own son. I can't help but think how frustrating that must be to want to get words out and not be able to. Then a little voice piped up and I felt a tugging at my coat. There was J hiding behind me, obvious fear in his large eyes as he whispered "mommy, where is that man from?".

Oh how my heart broke. I know he is 4 years old and had every reason to be uncertain about this man. But why was it so scary, why was it so foregin to my boy who lovingly interacts with his older brother all day everyday who sometimes cannot get a word out without stuttering and repeating himself loudly? He was scared of this man but I was able to explain that the man just had trouble getting his words out like C and wasn't it nice for the lady to wait patiently and to help sometimes. We talked at our table about how one day C will be a big man like that and maybe he will still have trouble getting his own words out.

And my sweet, sweet boy leaned over and put his hand on mine and said "and I will be like that lady, I will wait with a smile and I will help when I can".


  1. oh, man. now my heart is broken, too. you've written this so clearly - it's easy to envision it all.

    i'm glad you at least got some one-on-one time with your boy. that's awesome!

  2. just stumbled randomly on your blog. read this post and now I'm crying. what a beautiful child you have. well done mom.

  3. Wow. Beautifully written.
    I just recently had an encounter like that too, with my son (who has Autism). He is apparently afraid of people with very obvious physical disabilities. We've talked about it, and I can only hope I explained the importance of acceptance and differences, well enough for him to really get it.

    Kudos to your young 'in. :)

  4. allie4:29 PM

    Wow I got choked up reading that! You are an excellent writer and a very observant mother.

  5. I just found your blog through a Google alert for Tourette's. My oldest son, Jacob (11yo) has TS, OCD and anxiety issues. I also have a 3 year old son who has yet to exhibit any of those behaviors.

    When I read this post it made me cry. So many times I have seen a person who is having obvious difficulties and I look around to see how others are reacting to him. The reactions more often than not are negative. I worry that my son will have to deal with those also. As a mother it's hard not to worry about the future of our children.

    I look forward to poking around on your blog a bit. It's always nice to find someone who gets it.