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.
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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