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    Posted June 9, 2014 by
    This iReport is part of an assignment:
    Raising a special needs child

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    Raising a Special Needs Child


    CNN PRODUCER NOTE     AStulpin's daughters turn 4 on June 23. At birth, Leah, left, weighed just 15 ounces. Her fraternal twin, Madeline, weighed 1 pound 9 ounces.
    - dsashin, CNN iReport producer

    There is nothing quite like raising a child with special needs. It’s messy, often hard, and yet so very wonderful. Raising a child who needs extra help regardless of what that help, more often than not, is one of the most challenging and rewarding things you will ever do. Your successes will be magnified 100-fold along with the setbacks that come with raising a child with challenges.


    When our micro-preemie twin daughters, Madeline and Leah, came into this world at just 25 weeks gestation we were told that many challenges would lie ahead of us. However, what no one could tell us for certain was what those challenges might be and if both children would face developmental delays or to what degree.


    Today, our girls are on the cusp of being four years old and while Madeline walked away from her early birth unscathed, Leah faces expressive language delays, sensory processing disorder, one-sided muscle weakness and extreme oral aversion which requires her to use a g-tube for nutrients amongst other things. But don’t be fooled by the long list of medical and developmental challenges that reside in her chart because those things don’t define her. She is smart and sassy. Leah has a spunk that Madeline does not and it’s that spunk that most people who know her, attribute to her ability to overcome the challenges she faces daily. She is an inspiration to everyone she meets and she makes us so proud.


    Leah is my teacher and I have learned so much from her. I have learned that limits reside only in the mind of the person in question, and my daughter has shown me that she has no limits. She continues to crush the challenges set before her and forces her doctors and therapists to redefine what her capabilities are. I have also learned that we will win some and we will lose some and that’s okay. There will be days that setbacks will overshadow victories, but without fail she will rise the next day and show those challenges whose boss.


    When it comes to meeting milestones, Leah is on her own path filled with many twists and turns. So, when she finally meets a long-awaited milestone there is nothing but joy and celebration. One of my favorite milestones was achieved last August. Both of our girls received tricycles for their birthday and while Madeline hopped right on and pedaled down the sidewalk, Leah struggled to even get the trike to move. We worked with her for months to help her pedal and then… it happened. One weekend in August nearly two months after she first sat on the trike, Leah hopped on and pedaled like she had been doing it the whole time. Tears still stream down my face at the thought of seeing her take off down the sidewalk like she had been doing it all along, and it’s those types of victories that sustain us through the challenges.


    One of Leah’s biggest challenges thus far is her extreme oral aversion. Due to her extreme prematurity, she weighed 15oz at birth, and having to be intubated for more than three months while in the NICU, she struggles with ineffective swallow, tongue strength in order to manipulate food and the confidence to chew. She often gags on the tiniest particles of food that end up in her mouth. However, despite this challenge we are able to provide her with blended whole food via her g-tube which has strengthened her physically as well as developmentally. Since starting her on a blended diet, her rate at achieving milestones has increased and her overall health has improved immensely. Her oral aversion may be a challenge she will face for many years to come, but to be honest, with Leah there is no telling what tomorrow may bring. She is our “little bird”, a small wonder and a mighty force to be reckoned with.


    Although our life is often filled with challenges and uncertainty, there is nothing quite as rewarding as witnessing the magnificence of your child crushing preconceived limits and redefining what it is to be “special needs”.


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