Thursday, November 17, 2016

Isabella, Sugar and Spice

 Isabella, kissing Gus
“How’s Isabella?” I ask her mom, Linda.  I met and talked with Linda and Isabella a few months ago, just after Jacob’s Fund began sponsoring Isabella’s therapeutic riding.  I remembered Isabella as a quiet little girl who clearly loved her therapy horse, Gus.

“She’s progressing as a normal kid, very outgoing, she speaks her mind and has lots of common sense.  She’s healthy and happy,” Linda says of her daughter.

I feel like cheering.  Isabella is autistic and struggles with a language disorder.  Speaks her mind?  Outgoing?  You go, girl!

Linda goes on to give me some examples.  At school recently, she cut her head, just a small cut, fixed with a Band-Aid, but it bled.  Isabella blotted some of the blood on the paper she was working on.  Her teacher was momentarily startled until Isabella spoke in a dramatic voice, “I am signing my paper in blood for you.”  She often displays that dry wit in class, the teacher tells Linda.

At home a few days ago, Isabella started a game with her dog, chasing him around the house to the theme music from “Jaws.”  “She’s a hoot!” Linda says.

This funny, spirited girl’s life began with a rough start. When Isabella was born, she’d already experienced a great loss: her twin was miscarried.  Linda, her mom, feared losing Isabella as well.

At age two she was diagnosed with autism and receptive-expressive language disorder. The doctors told Linda that Isabella would never talk and predicted she’d be very low functioning.

It was a sad, dark time, complicated by Linda’s divorce from Isabella’s father, an alcoholic and drug addict.  And Isabella didn’t talk for the first five years of her life. 

Later, Linda remarried and moved to Atlanta, where she met Jessie, McKenna Farms’ Director.  From the first, Linda reinforced Isabella’s hippotherapy sessions with follow-up work at home.  She’s kept that up consistently.  It’s an important factor in a child’s developmental success. 

One of Isabella's hippotherapy sessions outdoors

Isabella’s bond with her horse is strong.  She falls forward on Gus’ neck as soon as she’s on his back, and hugs him.  “She wants to be all over him,” Linda laughs.

But as openly loving and interactive as she is with her horse, she’s still uncomfortable in social situations, especially with her peers.  Younger children and older people seem to be easier for Isabella to connect with; kids her own age – not so much.  One of her classmates seems to especially arouse her emotions – Isabella screams and cries when she sees him.  This is particularly upsetting to Linda, who wants her daughter to be able to adjust to life and handle situations like this. 

All of this is occurring just as Isabella is on the cusp of adolescence, a time of hormonal changes and an almost-universal feeling of social awkwardness.  Isabella’s ridership from Jacob’s Fund has been especially helpful now, because one of the psychological benefits of therapeutic riding is improved confidence and self-esteem, enhancing social relationships, and improving coping skills.

“I am immensely grateful for this chance you’ve given us,” Linda tells me.
While Isabella still encounters hurdles, like the purple-haired boy in her class, she’s amazing those around her. She’s already developed a great coping skill: humor.  “She’s very high functioning and she’s funny.  She’s developed a sarcastic sense of humor,” Linda says. “She’s an absolute joy.”

Isabella, sugar and spice, moving quickly toward becoming all that she can be. Another reason why Jacob’s Fund does what we do.  We’re thrilled to help Isabella, and we know we can only do that with your support.  Thank you.

Monday, September 5, 2016

Jonah's Journey

Jonah at hippotherapy

One of the things I like most about being the regular blogger for Jacob’s Fund is that I get to tell you about the sweet, funny, courageous kids whose hippotherapy and therapeutic riding costs Jacob’s Fund scholarships.

One of the things I find hardest is condensing their stories into some paragraphs that convey their glorious selves so that you can get to know them.

 I know you want to know what their conditions and diagnoses are and how you’re helping them through your support of Jacob’s Fund.  But there’s so much more to these children.

Take Jonah, for instance. 

Cassie at McKenna Farms had warned me before my visit with Jonah and his mom:  “He’s a cutie!”  And, oh my gosh! Is he ever!

Jonah was born with multiple heart defects, like Jacob.  At least one of those defects is the same as one of Jacob’s, hypoplastic left heart syndrome, a relatively rare birth defect in which the left ventricle of the baby’s heart does not form correctly before birth and affects blood flow through the heart.

Also like Jacob, Jonah has blond hair and blue eyes (though as you can see, Jonah also has an abundance of blond curls).

 Jonah's one-man band

Amy, Jonah’s mom, shared some of the challenges, fears, joys, and triumphs with me during our visit with her and Jonah at McKenna Farms.

Besides multiple heart defects, Jonah was born with a cleft palate.  He also has a chyle leak, (lymph, called chyle, forms in his digestive system and accumulates in his pleural cavity). Jonah has had difficulty swallowing food, which makes it difficult for him to get proper nutrition, but recently he's started eating more solid foods. He also has some hearing loss in one ear.

You’d think all this would slow a little guy down. You’d be wrong. Jonah wants to do everything, especially anything that his big sister, Lily, does.

He loves preschool, even though it wears him out. This year the littles don’t take naps, so he usually falls asleep on the way home. 

At four, he’s determinedly independent.  He has a hearing aid, but regards it as an extraneous bother. His preschool teacher recently told Amy, “I just want to tell you how smart Jonah is.”  And when I touched base with Amy just before beginning to write Jonah’s story, she told me he completed a forward roll at gymnastics yesterday, then stood up proudly.  (An aside – taking Jacob to Little Gym was always so much fun; my heart swelled with every task he completed and the joy he experienced.)

 Jonah at church 

American Sign Language has been a big help.  Rachel, his therapist at McKenna Farms, taught him the sign for horse, and for her name.  He loves coming to McKenna Farms and several times a week he signs “Rachel horse.”   His gymnastics coach uses sign language as well; as a result Jonah is able to learn even more. While fewer and fewer medical professionals at all levels use American Sign Language, it’s been of enormous value for Jonah and Amy to have found those who do (Jacob, too, used sign language before he was verbal, and taught me a few words.)  Being unable to communicate is very frustrating for children, and although all parents want to hear their child’s voice, sign language alleviates much of the frustration for children and adults alike. 

While Jonah’s still non-verbal for the most part, he can say “Mama” and his own version of Lily, his sister’s name.

I can’t talk about Jonah without bringing up dancing, any more than I can think about Jacob without remembering his great dancing.   When I saw this video that Rachel made recently, I knew I had to share it with you.  It happened in the middle of an occupational therapy session. Jonah was learning to dress and undress himself (he so wants to do things himself!) I think it captures some essential Jonah:

  Jonah rocks!

Jonah has needed therapy for most of his four years. Like many children - especially small children - clinical settings, which are so much like the medical offices and hospitals they’ve spent so much time in, Jonah found the sterile environment and white walls intimidating. But at McKenna Farms the environment is like a home, with the farmhouse and horses and trees, and sometimes an occasional cat roaming the barn and surrounding grounds. Therapy at McKenna is like playing.

 Jonah enjoying a cheeseburger and apple juice

While Jonah is making progress, and joyous accomplishments pop up all around - like eating cheeseburgers and drinking through a straw - there are challenges ahead, some very big ones.  Jonah was scheduled for another heart surgery this summer, but he’s been doing so well that’s been postponed to next summer, so he’s scheduled for a heart catheterization at Thanksgiving.  Amy and Linn are seeing signs of the need for surgery, too: Jonah's fingers are blue more and more often, and his stats have started coming down. 

Jacob’s Fund is proud to support Jonah’s hippotherapy.  That we are able to do so is because of you.  Thank you.