Kit provides Down Syndrome guidance

Tiffany (back) and Zoe Thompson show what all comes in the “Zoe ups and Downs” kit. Tiffany Thompson started putting the kits together after finding after Zoe’s birth that it was difficult to find information about raising a child with Down Syndrome.  - Stephen Mercer
Tiffany (back) and Zoe Thompson show what all comes in the “Zoe ups and Downs” kit. Tiffany Thompson started putting the kits together after finding after Zoe’s birth that it was difficult to find information about raising a child with Down Syndrome.
— image credit: Stephen Mercer

For a few anxious months, Freeland’s Tiffany Thompson could not find much to help her cope with the Down Syndrome her daughter, Zoe, was born with.

The shock of having a child with Down Syndrome, along with both a lack information about the genetic disorder and people to call for support made the first months after Zoe’s birth in November 2003 difficult. Since then, however, a South Whidbey support group and additional information about the Down Syndrome gave Thompson more of an understanding of the disorder.

To help other parents in the same situation, Thompson has been putting together free “Zoe Ups and Downs” kits for several months. Funded by county and state grants along with money from Thompson’s relatives, each kit comes in a box filled with about $60 worth of materials. The box contains a parenting book, a gray Down Syndrome Awareness pin, medical dictionary, information about support groups, referrals, education; a copy of the Children’s Hospital Care Notebook, a children’s toy and a photo album. Quilts knitted by Freeland’s Dorothy McCann for the children are part of the package, as well.

As of Monday, 21 kits had been made. Thompson said three were sent to South Whidbey families and two to families at Stevens Hospital in Edmonds, where Zoe was born.

In fact, Thompson said the first ever kit went to the parents of a Down Syndrome child born at Stevens on Nov. 30. She said she found out when the child’s father left a message on her answering machine.

“It gave me goose bumps all over,” Thompson said.

Also recognizing the kit’s value is Freeland resident Rebecca Bishop, a neighbor of the Thompsons. Rebecca and David Bishop’s youngest son Andrew, 3, suffers from Down Syndrome.

There is a lot of information available on Down Syndrome, Rebecca Bishop said, but the kit shows families what they need to know to start collecting it.

“I certainly wish I had it when Andrew was first born,” Bishop said.

She did play a role in shaping the kit. Thompson said Bishop and other members of the special needs support group provided advice on what went into the kit. Bishop said credit for spearheading the kits, though, should go to Thompson.

Thompson said the birthing center at Stevens Hospital now provides kits for all children born with Down Syndrome there, something possible unique to the Edmonds hospital.

Other hospitals provide medical assistance for children with Down Syndrome, said Debbie Phillips, the Thompsons nurse at Stevens Hospital during Zoe’s birth. She said she doesn’t know of any other area hospital, though, that provides a kit for newborns with Down Syndrome.

“It’s very exciting. she’s breaking new ground,” said Phillips, who also has a child suffering from Downs Syndrome.

Besides Stevens Hospital, Thompson said the kit’s are available upon request by pediatricians at Whidbey General Hospital. To obtain a kit, she said people should either contact her or Rene Denman, Island County’s parent-to-parent coordinator.

Not an easy beginning

Thompson said she and her husband, Steve, did not know that Zoe suffered from Down Syndrome until after Zoe’s birth in November 2003. Tiffany Thompson said 80 percent of families do not know their child has Down Syndrome until after birth.

Following Zoe’s birth, Thompson said the only help they received from the hospital was the name of someone to talk to who’s child suffered from Down Syndrome.

Adding to the Thompsons confusion, the books in South Whidbey’s libraries about Down Syndrome were written in the 1980s, Tiffany Thompson said. Three of the books even said parents should not get attached to a baby with Down Syndrome, because these children will eventually be institutionalized, she said.

“It was completely just a black hole for us,” Thompson said of the information available.

Several months after Zoe’s birth, Thompson began attending a monthly South Whidbey-based special needs support group meetings. She’s also frequently talked to Denman, who helped her obtain the grants for the kits.

Up-to date books and Internet information have has helped her get over the initial shock and appreciate having Zoe.

“She’s not the child I expected, but its definitely worth it,” Thompson said while hugging Zoe in her Freeland home this week.

Rebecca Bishop said blood tests and ultrasounds she received while pregnant made the news that Andrew suffered from Down Syndrome a little less surprising.

“When we left the hospital after nine days, we were given one number of a woman whose child was also born with Down Syndrome,” she said.

The best information came from a co-worker of David’s who provided the book “Baby’s with Down Syndrome,” Rebecca Bishop said. in fact, it is also the book that is included in the kit, she said.

For additional help, Bishop said a support group for Whidbey Island families raising children with Down Syndrome formed in South Whidbey last year. Thirteen Whidbey Island families who have family members suffering from Down Syndrome came to the first meeting last year, she said.

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