able to go home.
At about six months old, Angela was becoming increasingly concerned that Rigg was not hitting his developmental milestones, so she was referred to the Waisman Center in Madison for genetic testing. Rigg was diagnosed with Klinefelter Syndrome; a chromosomal condition that affects male physical and cognitive development. Though the diagnosis was correct, Angela feared that
Rigg’s developmental delays were far too severe to be the result of Klinefelter’s alone.
Angela’s instincts were correct. After further testing, doctors diagnosed Rigg with Angelman Syndrome. Angelman syndrome (AS) is a neuro-genetic disorder that occurs in one in 15,000 live births. AS is often misdiagnosed as cerebral palsy or autism. Characteristics of the disorder include developmental delay, lack of speech, seizures, and walking and balance disorders. It’s typical for people with Angelman Syndrome to live a normal life span, but they do require life-long care.
I was home alone the night I got the diagnosis,” revealed Angela . “My husband, a pilot, was on his way back from a trip. I went to the computer to look up Angelman Syndrome. I was devastated.”
Though the therapy was a positive experience—Angela keeps in touch with some of Rigg’s therapists to this day—Rigg’s developmental delays were considerable. At two years old, he was unable to roll over, and he suffered from Strabismus; a vision condition in which a person cannot align both eyes simultaneously. Eye surgery was able to correct his vision, and today, at 6 years old, Rigg is non-verbal but is able to roll, watch TV, listen to music, splash in the pool, and play on his “GoTalk” and ipad.
The “GoTalk” is an easy-to-use communication tool that gives Rigg a voice. Angela admits that Rigg is more interested in playing games that anything else. “Pretty similar to every child,” I noted.
“The teachers and students at Lincoln are fantastic!” asserted Angela. “Rigg has been introduced to every class by his sister, and the students often greet Rigg at the end of the day!”
The Sievers bring Rigg to community events, on bike rides, and they also include him in their Geocaching adventures!
I’ve gotten to the point where I really don’t care what other people think. When my son makes loud humming noises, I harmonize! I used to get embarrassed, but now I just think, it is what it is.”
“We have met so many wonderful people because of Rigg!” said Angela. “We’ve made amazing friends and found a wonderful church, Orchard View Alliance, which focuses on individuals with special needs.”
But, even with a solid support system, Angela admits that life can be hard for her.
Rigg is a growing boy, and though he is able to propel himself with a walker, Angela still has to do a great amount of lifting and carrying. In addition, Rigg only gets about four hours of broken sleep per night. With her husband gone so often, and no family in the area, Angela has relied on respite services to give her some much-needed breaks.
Many of the breaks that Angela is able to take are due to the respite funding provided through the IDS Respite Program. You can see how important respite is to her when she explains,
I recently had the opportunity to go on a date with my husband, and it was so great! He has a stressful job, and he kept saying, ‘I’m so relaxed. I’m so relaxed.’”
“We’re really thankful to IDS and the support we receive, continued Angela. “It’s even fun to get out of the house just to go grocery shopping. Respite has helped us care for ourselves, so we can best care for Rigg.”
Unfortunately, the approximately $800 the Sievers get per year from IDS, doesn’t go very far. When you do the math, it gives them about 2 hours of respite per week. IDS hopes to raise more money to help the Sievers and the 21 other families in the program receive additional “gifts of time” (or respite). I could see the concern on Angela’s face when I asked her about the future.
Rigg is our forever baby. It’s hard to not worry about
what the future holds. We are grateful for the support we have from IDS, the school, our church, and friends. We just take it day by day.”