Sunday, October 21, 2012


    In the past when I thought of having children I had all kinds of dreams and expectations. I pictured how birthdays and holidays would go, and had visions of trips to the zoo, parks, etc and what they would look like. When J was an infant I would gaze into his eyes and couldn't wait for the day he would say "mommy". I dreamt of the day he would waddle over to me to give me a big hug and a kiss. As time has gone on I am still waiting for many of these things to happen, and those that have have looked different than I expected. 
    As you know, I am still waiting to hear "mommy". Or daddy, dog, ball, milk, more, ANYTHING. My guy likes to give hugs, but on his terms. If I ask for one he's not going to come over and give one. He will however run into my arms if I have been gone for a bit, and I absolutely love those moments. He also comes over for random hugs and cuddles throughout the day, and I cherish every minute of it.  He has yet to give me a kiss, though he will usually tolerate when I give him one. I am still hoping one day to see those little lips pucker up to plant one one me, or to at least see look of understanding when I ask for one, as he runs the other way because kisses are "icky" 
    There have been days when I have let these expectations not being met get to me. When the weather started getting nice this past spring and summer I began bringing Jake to various playgrounds. I envisioned him climbing up the jungle gyms and flying down the slides. Instead he acted as if the equipment wasn't even there. He was content to wander around aimlessly, and I spent most of the time bringing him back. I stopped meeting at the playgrounds for playdates with my mommies group. We never got to spend time with the other children and their moms, and it was hard for me to see children younger than him enjoying climbing, sliding, and running with the other kids while I tried to keep Jake from running away.  I eventually found a nice fenced in playground attached to a preschool that we were able to visit on the weekends. There Jake is able to explore as much as he wants, and I don't have to worry about him going to far. They also have some smaller equipment which I will carry Jake on to and encourage him to try climbing. He seems to enjoy himself, and when he is happy I am happy.
    Our trip to the zoo this summer was the cause of my own mini breakdown. My mother-in-law was visiting and we decided to take advantage of a nice and therapist free day to take Jake to see the animals. Since J doesn't really follow a point, I didn't really expect him to look at animals I pointed out to him. I figured we'd go to exhibits with the bigger animals walking around to and see if he noticed or took interest in them. I made the mistake of taking him out of the stroller early on. From his vantage point you couldn't see anything. We were at the polar bear exhibit and the animal was walking all around. I took him out so he could get a look. I *think he saw it, and seemed a bit interested. Next was the barn which was right next door, so I carried him over as he wouldn't be able to see anything from the stroller there either. I got him to look at the horse (for about 2 seconds), but failed to get him to notice the sheep, despite them being about 1 foot away and actually within reach. He was more interested in walking around aimlessly (though very happy) When it was time to move on he had a mini fit because he didn't want to be picked up and carried out. He isn't good at holding my hand and walking, unless of course it is in the direction he wants to go. Trying to get him back into the stroller was a major fail. He pitched a fit, threw his body around, etc. I carried him and we continued on to the sea lions. We went to the "underwater" part, where the sea lion swims by right in front of you. Again, I couldn't get him to take notice of the giant animal swimming in front of our faces. He was wriggling and trying to get down to run around. After a few more failed attempts to get him back in the stroller (and one very hot, sweaty mom), we headed back to the car. We were there just under an hour.
    I think things may have gone better if he had stayed in the stroller, but as I said, the way the zoo is set up he wouldn't have seen much. I guess what was hardest for me was seeing the other children at the zoo and their reactions to the animals. They were pointing, oohing & ahhing, and  seeking them out. Seeing a little girl probably about 12 months old in her mom's arms pointing to the sea lion as it swam by, saying "more, more" in anticipation of it coming back while J wouldn't even look at it tugged at my heart a bit. On a day to day basis I see him making great strides. When we are home he is such a delight and is really interested in interacting with us. (He is typically well behaved in public also) It's when we break out of our bubble and are around NT kids his age that it really hits me how delayed he is in so many areas. Just when I think I have fully come to terms with his dx and all that comes with it, I have a day like that day at the zoo.  It took all I could not to cry at the zoo (and in front of my MIL) I guess I am sometimes still grieving the loss of the life I had "expected" for J. Experiences like seeing my son enjoy the zoo and being able to watch him delight in the animals and share in his excitement. I need to remind myself that he is a very happy boy, and that to him he isn't feeling like he is missing out on anything.  And I still haven't given up hope that one day he WILL be able to have that zoo experience.


  1. I know what you mean about being in a bubble, and kind of forgetting the delays. My best friend came over with her daughter on Saturday for a little while. Her little girl is two days younger than Dylan, and we bonded even more while pregnant since we were due at the same time. It's very surreal to see her little girl talking in sentences, and being very vocal. She played a recording for me of her daughter at night time, yapping away, and my friend is telling her "be quiet!". It was a cute recording, but it made me want to cry. Dylan is making huge strides since we started therapy, but I forget how far behind he is compared to NT kids his age. I wish my son would keep me up at night because he's talking up a storm!

    We can't give up hope, our kids are fighters and they are going to go so far in life. And one thing is for sure, we will never take for granted those moments that many parents don't think twice about, or may even get annoyed over. We are experiencing motherhood on a whole different level than most. I firmly believe our generation of spectrum kids are going to make a huge difference in this world.

    And I also believe you and Jake will have that zoo experience some day!

  2. Hi. Since my son is only 4 now, it wasn't that long ago that I was feeling those same things ... yet it feels like a lifetime ago. Progress does happen. Sometimes slower. Sometimes faster. You're feeling the exact same thing that we all have felt. It's not wrong or right but it's normal. I very vividly remember the 1st time we went to the zoo and my Jay actually pointed to something. As a matter of fact, it was in the spring of this year soon after he turned 4. Don't lose hope.

  3. Mina, I always feel the same way when I hear a parent complain that their child talks too much or won't stop saying "mommy". If Jake would say mommy he can say it a million times and I will never tire of hearing it. And you are right, our kiddos are going to change the world :)

    Lifeonthejtrain thank you for sharing your story and for your encouraging words.. It is always helpful hearing from someone who has gone through similar things. I recently found your blog and have enjoyed reading about you and your boys. Keep the great post coming!