The Special Ones
Chances are, as a parent, you know another parent who is raising a child with a disability. You may even be raising one yourself. In California, experts say that more than 10 percent of children ages 0 to 5 have a disability that may impact their ability to play and learn. In the U.S., more than 4.6 million children have been told they have a learning disability.
Whether your child suffers from a mild form of dyslexia, is somewhere on the autism spectrum or is seriously developmentally impaired, it doesn’t change the way you feel about him or her. It just changes the way you view the world.
In this issue of Bay Area Parent – the second of four in a series on children with special needs – we talk to families about how living with and loving a child with a disability impacts their lives.
Grayson Hund was just 2 ½ when his parents, Valerie and Tony Hund of Livermore, learned their only son had autism. “It began as speech regression, which was extremely rapid,” Valerie says. “Grayson would learn a set of words then lose that set of words; gain another set of words to later lose all his words.” By age 2 ½ Grayson had learned up to 45 words, but by the time he was 3, he lost all speech.
Grayson is now 14. “He has a wonderful disposition and seems to be content in his day-to-day life,” Valerie says. “I often call him ‘my gentle giant’ because he is now six feet tall.”
Bay Area Parent: How does Grayson communicate?
Valerie Hund: Verbally communicating with Grayson, which we do through the Picture Exchange Communication system, is a challenge. Grayson has digital small photos at home and at school, and hands the picture to whomever for his wants or needs. In addition, he has some sign-language skills and will gesture signs for his wants or needs.
What’s the most surprising thing about his condition?
We thought we’d mastered everything about autism. This past November, unfortunately, Grayson experienced his first grand mal seizure. We’d never read nor heard that 25 percent of adolescents with autism encounter seizures. It’s not proven why, but some theories point to puberty perhaps triggering certain parts of the brain. Grayson was at home, so we provided him care immediately. He had two other incidents (both in February), and is currently on anti-seizure medication and hasn’t had any other seizures.
What joys have you found through his condition?
Before our family knew anything about the world of autism or met anyone in the special-needs field, we were oblivious to what an amazing group of individuals these people are, who deeply care about these children.
What were your misconceptions?
Years ago, individuals with autism were stereotyped like the character Raymond in the movie “Rain Man,” played by Dustin Hoffman. While Raymond was extremely brilliant (savant), Hoffman was portraying the life of 10 percent of those with autism who are savant. The reality is that the autism spectrum is quite wide, from lower functioning to higher functioning people, with ranges in between. Every child and adult with autism is very different.
What have been the most helpful programs?
In addition to the Kaleidoscope after-school program in Dublin, Grayson attends respite camp each summer through the ENN organization at Camp Arroyo in Livermore, which provides a break to families with special needs. Grayson also participates bi-monthly in Hoofprints on the Heart, which focuses on abilities rather than limitations via horse therapy for children with special needs.
What life lessons have you learned?
To experience all the goodness life has to offer, to appreciate life for what we have and to realize that someone else in this world is probably having a harder time than me.
San Mateo residents Shellee and Reno Cobb noticed their son Hunter’s paralysis at birth; however, they were told it would go away within a few days. It didn’t. Hunter spent 11 days in the NICU because he developed infections and was very ill. Doctors weren’t sure what the cause was, and thus began the long road to diagnosis: Möbius Syndrome – a rare congenital neurological disorder that has affected only about 500 people in the United States. Hunter, who turns 1 on June 17, is missing his sixth and seventh cranial nerves – he is paralyzed on the left side of his face, and until 6 months of age was unable to move his left eye laterally. “Having a baby is such an amazing experience, and as far as we knew we were going to have a healthy baby,” Shellee says. “So, having a child who has disabilities really shocked us. But while things didn’t go exactly as planned, Hunter is the most amazing baby. The moment I saw his precious face, the love started pouring out and hasn’t stopped.”
BAP: What has been the biggest challenge?
Shellee Cobb: Feeding Hunter has been a challenge, due to the paralysis. Doctors wanted to put a feeding tube in him, but I knew I could do it on my own, so I fed Hunter with an eye dropper for quite some time. He also wasn’t seeing properly out of his left eye. At 6 months, he underwent surgery, and today he can turn his eye to mid line. He is no longer seeing double. It’s a whole new world for him. Speech therapy is the next program we’ll start. Since half of his tongue is paralyzed, forming words and sounds is difficult.
What are your frustrations?
Möbius Syndrome is rare, so many doctors don’t know much about it. I’ve found myself having to explain it to some doctors, therapists and others. This doesn’t make a mother feel very assured when the person who is supposed to be doing all they can to help my child has no idea what they are working with.
What have you learned about raising a child with special needs?
Hunter is the same as everyone else, he’s just had to work at life a little harder. Besides appearance and missing some of his nerves, he is the same as you and I. To treat Hunter any different would be an insult.
Hunter is an amazing baby and we are so blessed to have him in our lives. We couldn’t have asked for a more precious child.
What programs have helped you?
Without the support of programs from East Seals Bay Area, Golden Gate Regional Center, California Children’s Services and the Blind Babies Program, we would be lost.
Harrison, 4 ½, was 32 months old when his parents learned he had developmental delays. Harrison lives with his younger brother and parents in the Outer Richmond district of San Francisco. In approaching his condition, Harrison’s mother, Jennifer Tang, initially was scared for her son, but she quickly scratched on every door she could to get help. Today, Harrison attends two different schools – one is a class with typically developing children, the second is a special day class offered through the San Francisco Unified School District.
BAP: How do you approach Harrison’s condition?
Jennifer Tang: Things have to be purposeful; everything is structured and must be continuously repeated. Routines are key.
What are some of the challenges?
Getting Harrison the appropriate help is a constant struggle. Being told by professionals that he is not severe enough to qualify for their current program or having professionals choose not to help is frustrating. No one seems to care long enough to listen and provide appropriate assistance.
What are some of the joys you’ve experienced?
I never thought I would be delighted to hear my child talk back to me, but I was and I am. One day, I even gave Harrison a timeout. “For what?” he replied. I pretty much love anything and everything he says.
What insight can you pass on about raising a child with special needs?
Always look into their eyes and hold their little hands. Harrison just needs a little more time. He can do it.
How are you helping your child to lead a typical life?
We are teaching him that he can.
Are there programs that have helped Harrison?
We really appreciate the Golden Gate Regional’s Early Intervention program.
When Chris Wagner was in preschool, teachers found out he had some serious delays. They told his parents, Pleasanton residents Jeanne and Steve Wagner, at a parent-teacher conference, which started a long series of tests. But in three years, all the Wagners really heard was that Chris was “delayed.” It was not until Chris was 6 that he was diagnosed with Pervasive Development Disorder, also known as ASD or an autism spectrum disorder.
BAP: What does Chris need?
Jeanne Wagner: Planning is a must for him and we talk to him so he is prepared for what is coming. We don’t do things that will overwhelm him.
What are his struggles?
Chris’ biggest struggles are in school, where he doesn’t have someone who will quietly explain things and intercede for him. It is the toughest part of his day. Ironically, it is children like him who cause the most stress. One child might hum to give himself comfort and help him concentrate, while another can’t function with the humming.
What are some of your joys?
Chris is my best buddy. We travel and go to the theater together; we share books and movies. He has reached an age where he will watch old movies with me.
What have you learned about raising a child with special needs?
Most people are understanding and helpful. But people should listen to the parents who, more often than not, know how to handle situations with their special-needs child. I have been with Chris when he is getting upset and have had someone try to “help.” If the parent says “no, thank you,” people really need to respect the parent and not intervene.
What are your frustrations?
I’ve had people tell me Chris was “just a quiet kid” or “just learning a little slower, he’ll catch up.” Especially when the child is younger, if a parent shares the fact their child has a disability, it doesn’t help or give comfort to tell the parent there is really nothing wrong.
What is it like living with Chris?
Sometimes it’s like dealing with a 2-year-old on teenage hormones.
Nicole and Jacek Ostoya, business owners of Harlot – a premier San Francisco nightclub – learned their daughter Milla had a disability just after she was born. She wasn’t breathing and spent six weeks in the NICU undergoing tests and surgeries. Milla has a rare chromosomal abnormality known as Partial Trisomy 18, and is both mentally and physically disabled. “We are lucky it’s Partial Trisomy,” says Nicole, “as full Trisomy 18 babies’ statistics are tough – only 10 percent live past the age of 1.” While Milla, now 9, eats through a surgically implanted tube, is in a wheelchair, and will likely never speak, she is also a joy to her parents with her infectious giggles. Nicole adds, “We call Milla the ‘sunshine girl’ of our family. She wakes up laughing and keeps it up all day long.”
BAP: What have you learned living with Milla?
Nicole Ostoya: Prior to having Milla I would have thought the idea of having a special-needs child too daunting a task to face. She’s made me a happier person.
What are your struggles?
Some of the simplest things, like grocery shopping, present challenges. You can’t push a wheelchair and a shopping cart. Also, having a disabled child puts a lot of demands and stress on siblings. Our son just started noticing that people stare at Milla and he gets very upset. I’ve always tried to lead by example, so I invite any child who seems curious about her to meet her, and this can make the difference interesting versus scary or strange.
What have been the greatest hardships?
The endless doctor appointments are hard. Milla had scoliosis, so we just spent 33 days at UCSF having her spine straightened because it was curved at a 95-degree angle and was crushing her insides and pinching a lung shut. The second hardest thing is the fear. We’ve had doctors make blunt comments like, “you’ll be lucky if this one lives ‘til 10” or, “you’re lucky you live today. Back in the days of the Spartans, we used to leave our handicapped kids in the woods and let the wolves get them.” My reaction: who lets you near patients? You learn to enjoy every day and keep those voices out of your head.
What is the most surprising aspect of raising Milla?
People avoid looking at or asking about Milla. I might have been one of them prior to having her. I find myself the most comfortable when people who are meeting us for the first time just go ahead and ask what her condition is and open the door.
What are some myths about raising a special-needs child?
“Your life is over, you have to quit your job and devote your life to taking care of this child.” This is the furthest thing from the truth. I have been a professional throughout my life with Milla and just started a new job as the CEO of Studio BeautyMix, a cool indie cosmetic retailer.
Another myth is, “You won’t get anything back from your child.” To this I say: what 9-year-old still lets you cuddle with them?
David Dash was born eight weeks early. His pediatrician told parents Deborah and William Dash of Livermore that David would be at increased risk for cerebral palsy as a result of his premature birth. The pediatrician kept a close eye on David and gave the family a definitive diagnosis when David was just 14 months old. David, now 18, has cerebral palsy (specifically spastic diplegia, which means “two stiff legs”) and exhibits some behaviors of autism.
BAP: What has been the impact of David’s condition?
Deborah Dash: Most of the impact comes from logistics – transportation, mostly. Our walls are pretty marked up from the wheelchair. Our babysitter has graciously allowed us to install a ramp at her house. And, although California is light years ahead of other states in ADA compliance, there is still the occasional space issue. We have gotten into the habit of scouting restaurants and hotels in advance to make sure that accessibility will not be a limiting factor.
What are your everyday struggles?
There are a number of challenges including post-orthopedic surgery issues and other physical challenges posed by a body cast (when younger), and plastic leg braces (currently). One daily challenge is the “chain of custody.” David goes from home to a babysitter to the school bus to school to the school bus to the Kaleidoscope Activity Center to the Dial-a-Ride bus and back home. My husband and I both work out of the immediate area, so if any of the links in the chain break, we go into crisis mode to get David where he needs to be.
A particularly difficult problem to solve was finding a dentist who would treat him. Nobody likes going to the dentist, but when David was younger, it would take several of us to hold him still just so the dentist could get a look, much less do hygienic work. Our pediatric dentist told us not to bring him back any more. After much research, we finally found an excellent dental group that specializes in this kind of care. While it’s a 45-minute drive each way, with their experience and patience, David’s dental visits have gotten easier.
What has been most surprising?
Occasionally, David will say something that is akin to him peeking around a door and saying something surprising that makes sense. But then the door slams shut. These rare, brief glimpses into his intellect have convinced us that there is a “David” in there who just can’t get out.
What are some of the joys?
I firmly believe that children are born with their personalities already formed by genetics, and David has always had a sunny disposition and demeanor, which makes it much easier to deal with his limitations.
What insight have you gained from raising a child with special needs?
Raising a child with special needs takes a different set of skills in each case depending on what the child’s limitations and abilities are. But this is true of raising any child. You just have to adapt – and people are more capable of adapting than they generally think they are. There’s no point in saying, “Why me?” Well, why NOT me? What makes me so special that I shouldn’t have had a disabled child? It’s the luck of the draw. And you don’t have to look very far – or for a very long time – before you find someone who is worse off than you are.
Dana Young is an Oakland-based freelance writer and mother of 7-year-old triplets.
By the Numbers
54 million – The estimated number of Americans (one in every five persons) with a disability. (Source: Easter Seals Bay Area)
4.6 million (7.5 percent) – The number of U.S. children 3-17 years of age who have been told they have a learning disability. (Source: CDC)
60 percent of children in California with special healthcare needs are more likely to be male than female. (Source: kidsdata.org, a project of Lucile Packard Foundation for Children’s Health)
More than 10 percent of children ages 0 to 5 in California have a disability or special need that may impact their ability to play and learn. (Source: First 5 California)
7.5 percent of children and youth ages 5-20 in California had a disability, according to the 2000 Census, a figure higher than in most Bay Area counties. San Mateo County’s rate was the lowest, at 6.4 percent, while 8.1 percent of children in San Francisco had a disability. (Source: kidsdata.org, a project of Lucile Packard Foundation for Children’s Health)
What Are “Special Needs”?
What does it mean when a child has special needs? For many, it’s a designation of something a child cannot do in some way, shape or form – be it developmental, physical, emotional, social, etc. There are children whose needs, in particular health requirements, are greater than others. According to the Academy of Pediatrics, children with special healthcare needs are those “who have or are at increased risk for a chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” That’s quite a laundry list of areas within which an astounding number of diagnoses might fall. Children deemed to have special needs may have developmental delays; they might fall within the broad spectrum of autism disorders; many have physical limitations as a result of a disease, birth defect or medical complication such as Cerebral Palsy, Down Syndrome, Multiple Sclerosis; others struggle with mental challenges; and for some, even food allergies are the reason for the distinction.
– Dana Young
Blind Babies Program: Specializing for more than 60 years in blindness by providing critical early intervention and education services to families of infants and preschoolers who are blind or visually impaired. blindbabies.typepad.com.
California Children’s Services: A state program for children with certain diseases or health problems. Through this program, children up to 21 years old can get the healthcare and services they need. dhcs.ca.gov/services/ccs/.
Easter Seals Bay Area: Helps individuals with disabilities and special needs, and their families, live better lives for more than 80 years. bayarea.easterseals.com.
Exceptional Needs Network: Founded by parents of special-needs children, the goal of ENN is to find novel ways to help families of special-needs children in the Tri-Valley region of the San Francisco Bay Area. ennetwork.org.
Hoofprints on the Heart Adaptive Riding Center: Focusing on abilities rather than limitations, HOTHARC offers challenging individualized programs that encourage physical, academic, social and emotional growth to individuals with special needs. hotharc.org.
Golden Gate Regional Center: Works toward a future where all people with developmental disabilities and their families have the opportunity to belong, contribute and thrive in their home communities by directing their own lives. Located in Marin County, San Mateo County and San Francisco County. ggrc.org.