Tuesday, January 29, 2013

Making the Garden Grow

Today we return to one more guest post from my amazing friend Posy.  Her post today delves into the typical schedule of a special needs parent, which is obviously pretty near and dear to my heart as I'm a speech language pathologist.  

Thank you so much for writing for me friend!

Making the Garden Grow

Special Needs are time consuming. They’re exhausting, painful, stressful, and absolutely rewarding. Every parent rejoices when their child learns something new. Some may even start to take milestones for granted as their children grow and develop more new skills every day.  A Special Needs parent rejoices and flies on high for weeks after a skill is learned, because we had to teach it to our child every teeny step of the way, over and over again.

Tiny Flower has her own posse for getting her to reach her full potential. She’s on her second posse, actually, as she switched from a daycare center to a specialized hospital-based program and a babysitter in our home.

She has a Speech and Feeding Therapist (also known as a Speech-Language Pathologist or SLP). Tiny Flower has low muscle tone throughout her entire body, including her jaw and tongue. Her SLP is not only helping her to learn how to speak, but also working those muscles so she can develop the ability to chew and swallow without aspirating. The SLP uses a variety of special spoons, a washed out honey bear with a piece of tubing to transition from bottle to straw drinking, facial massage and tools to stimulate the inside of her mouth. This is actually one of the more frustrating things for me. Tiny Flower isn’t crazy about anything coming towards her face, which makes at-home carry over difficult. She’s also a beast to feed. Not only does she not self-feed, she will only eat consistently for me. And even that is a battle now as she’s entering toddler-hood and trying to exert her independence in the only way she can – by refusing to eat or drink. I’d be more ok with it except that she’s 19lbs and needs to put on some weight. C’mon, kid! Eating is awesome!

Next member of the crew is the Occupational Therapist. This is the person who helps Tiny Flower learn fine motor skills. Through the use of toys, books, exercise equipment and varied positions, OT helps develop muscle strength as well as fine motor skills. This one is a fight as Tiny Flower has a reflex to pull her hands back and away when someone tries to do hand-over-hand with her.  Sometimes it’s better than others.  This therapist also overlaps heavily with physical therapy. Both therapies focus on developing muscle tone and physical endurance so Tiny Flower can become mobile and wreak havoc on everything around her.

Physical Therapy at this point is the most important member of the Flower Posse. Infant-toddlers learn about their environment and develop cognitive skills by exploring their world. When a child is immobile, has limited range of motion or has any other physical hindrances, she is unable to learn because she cannot explore. Everything is so tightly connected to physical development at this point. Not only is she learning how to bear weight and develop those very important core muscles, PT is teaching Tiny Flower that her limbs are connected to her and that she can move them when she wants to. It’s building the foundation for mobility. If you ask Tiny Flower “Where is foot?” she’ll raise and grab her foot now! Way to go PT and OT working together! 

And the last of the Flower Posse are the Special Instruction therapists. They run the Special Ed classroom portion of Tiny Flower’s program. These therapists overlap with all of the other therapies. They work at fine tuning the skills that are being taught as well as adding in a lot of cognitive work. Through songs, books, play, snack time, and circle time they work tirelessly to ensure that the children in their room get the most out of all of the treatments they are having.

These incredible people are the gardeners who come and lay out the garden. They plant each bulb with care and water, feed and cultivate it tirelessly. They give the at-home gardeners the foundations to build on and to create beautiful and lasting flowers. Without them, we’d have a wilting rose and a mess of mulch that we’d have no idea what to do with. 
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1 comment:

  1. Thank you so much for sharing yours and Little Flower's story, Posy. I am moved by the love and honesty in your posts and I wish I could hug you and your sweet girl!


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