Special Exposure Wednesday

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I realized something this week: It’s never going to end.

For the first two and a half years of her life, my sight was focused on getting Julianna mobile. Crawling, pulling up, and all the other steps along the path to walking. I knew that on the far side of walking lay teaching her to talk, an even more daunting task. After all, you can grab a leg, bend it, set it down, grab the other one—you can guide her through the motions of walking, and thus help her learn what it feels like. The lips and tongue are not so accessible.

But all this time, I’ve thought that once those two monumental tasks are out of the way, life will get easier.

Until a few nights ago, when I realized that beyond speech lies reading; beyond reading lies math. And beyond these two most basic life skills lie a host of things I haven’t yet foreseen that walking, talking, reading and counting are not going to prepare her for. At every step of the way, learning will follow the same, agonizingly slow pace, each new milestone just as dearly bought as the last with great effort from her teachers…and from us.

The knowledge overwhelms me. I whispered it to Christian, lying in the darkness two nights ago, and he went still for a moment. “Oh, I know,” he said. “I can’t think about it, or I’ll panic.”

I try to be positive about life with special needs. But this is definitely not one of the warm fuzzy moments. I know I have visitors today from 5 Minutes for Special Needs. Those of you who are farther along the path, what words of wisdom have you to offer?

***

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16 thoughts on “Special Exposure Wednesday

  1. I can’t imagine how it feels. My sister sometimes, in quiet moments, gets those panicky feelings about her daughter with Autism. The challenges are a bit different, but some of them are the same, and sadly have not very much to do with reading or counting (as you alluded).

  2. I’m not as far down the road as you, and my kids’ challenges are slightly different, but I’m with your husband on not thinking about it. At first all I could think about was the future, and it stopped me from doing what I needed to do in the present. Easier said than done a times though. I wish you and your family well- your daughter is gorgeous!

  3. Reading this gave me goosebumps – it’s a long road, but you will persevere. Patience and consistency is all I can say – my sister has a son with Autism (not the same, but still a challenge) and that’s pretty much what has gotten her through all the years of worry. ((HUGZ!!))

    Julianna is ADORABLE!!

    WW: Goofy Contortionist

  4. My daughter is 8 years old and I have learned a lot along the way. One lesson I learned is that these moods and realizations come and go. You may feel sad and upset about this for awhile, but it will get better. Focusing on one day at a time is what helps to keep me from feeling overwhelmed. The best thing for me is to focus on how happy and sweet and loving my daughter is. When she is happy, I try to let everything else go and be happy too.

      • Sarah M.

        This last sentence in your reply describes me exactly. It’s exhausting trying to *teach* your child what comes so naturally to the majority of kids. There are days I don’t think I have any more left in me. And there are so many days that I ask, “Why him? Why me? Why did *we* get chosen for this?” It’s a complex answer that seems to reveal itself in bits and pieces each day, though many days the answer has to scream a little louder at me to get me to hear it. I’m starting to realize that the “Why me?” days (or as I often call them, the Autism Sucks days) are inevitable and, sometimes, even necessary. But I’m also realizing that there are just as many, “Life is pretty good” days. Like Debbi said, just focusing on one day at a time is what seems to have worked best for me. If I think about what lies ahead for us, I just get overwhelmed and tired and then I just want to shut down completely and say, “That’s it! I’m done!”

        I think you’re doing a great job and I thank you for all the inspiration you’ve given me through your writing!

  5. ….oh yes, I remember helping our daughter SIL [he couldn’t handle a special needs baby and didn’t stick around too long afterward] —anyway, yes, the exercises to help a Down’s baby/toddler is very time consuming, but it’s all so very worth the extra time and efforts. As for speech, the tongue…yep, but that too will surface in time. We learned to sign for our grandson, but over the years, with speech therapy and book reading and doctors…he overcame the ‘obstacle’ and all is well.

    The part of our lives with him, is, there is no love stronger or greater coming from him. He loves life. And I’ve said so many many times…if only the WORLD was inhabited by Down Syndrome people what a wonderful world it would be!!!

    Just have strength, and don’t rush things…in the years to follow you’ll be amazed at all the accomplishments.

  6. Reading your post I couldn’t help but some how feel Inspired. YOu’ve come so far already and your doing a wonderful job. Just look at her!! and how blessed you and she already are. Life has many challenges but know that you’ll never get more than you can handle.

    One day at at Time. Live for the Moment not for your fears

    Blessings

  7. First I love the picture! Second, I exactly how you feel! Meg’s first two years of life were tough, she was in and out of hospital, having multiple seizures and we’ve been playing physical, emotional, and academic catch up ever since. I’m always worried about school and each stepping stone that comes with it! It’s a long road but to see her meet each milestone with such enthusiasm makes it all worth it! On the tough days I think of Dorey from Nemo, seems rather silly but it makes me smile “just keep swimming!” xx

  8. Words of wisdom? Unfortunately no. But I can relate to how you feel. When Ashlea was little all I was worried about was “Is she going to live?”. It took awhile for me to realise that I was going to be her carer for as long as she lived. It is pretty confronting.

    I usually go with ‘don’t think about it too much or I’ll panic’. I just focus on today, and try to live one day at a time and not worry about the future. Its easier said than done though!!

  9. Sorry, no words of wisdom based on experience from me. My son, who has autism and pdd-nos, is only 7 so we are just beginning our journey. Sometimes I find myself looking at him and panicking, especially when I think of all the what ifs and all the work we still need to do. But there are also times I look at him and I am just in awe of how far he’s come. I think I need to focus on that a little bit more.

  10. I’m almost at the first end of the parenting business–my autistic son is 18 and will graduate (with a real diploma) from high school this year. As you’ve realized, having a handicapped child can be a blessing, but frankly, at times it just plain s—s. Here are a few things I’ve written over the years:
    http://rannthisthat.blogspot.com/2007/10/mourning.html
    http://rannthisthat.blogspot.com/2007/04/if-tulips-are-so-great.html
    http://rannthisthat.blogspot.com/2009/05/confirmation.html
    http://rannthisthat.blogspot.com/2008/10/dilly-of-book.html

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