DREAMING NEW DREAMS
NWI Parent focuses on our special needs children
"Everybody has abilities and disabilities. That's just the way it is. I'm not able to do certain things and I'm able to do other things. People with disabilities are also people with abilities."
- Pamela Williams, transition services coordinator, Arc Bridges
"Be aware that people with disabilities are in our world and anybody's family can be touched by a special need. We just don't know when or how. It's very possible. And that people with disabilities are really more like you and I than other people think. They just want to be treated with the same courtesy and respect as everyone else."
--Marie Simmons, Griffith, mother of two boys with cerebral palsy
Every year, Mariann Frigo brings a new crop of junior board members into Jacob's Ladder, her pediatric rehabilitation center in Portage. They are high school students who learn about giving back to the community among other life lessons as they interact with the center's clients, roughly 200 kids with special needs who receive various therapies.
When they arrive, the teens invariably ask, "Where are all the kids in wheelchairs?"
Such is a common perception of what "special needs" might look like to some. The fact is, it's not just the child using a wheelchair-a more preferable term-or the child with Down syndrome or even the child twisting his hands or having an especially expressive temper tantrum. The range of disabilities runs the gamut, many not so outwardly obvious.
It means the child who has trouble socializing with playmates because she just can't find the words. It means the child whose behavioral diagnosis leads him to resolve conflicts with his fists. Yes, it even means the gifted child who is solving algebraic equations in first grade.
A "special need" is typically described as the unique concerns related to a child's medical, physical, mental, emotional, developmental or behavioral disability.
While this is one vague and general way to categorize the array of people that require specialized help to function alongside their more average peers, as one pediatric rehabilitation manager puts it, "You can't chop a child into pieces." Though necessary in many cases to pinpoint and get much-needed help, the actual diagnosis is something that often fades into the background for therapists.
Instead, therapists tend to focus on the diverse and overlapping needs that cross over the various specialties of therapy.
There is speech and language therapy, which focuses on expressive and receptive language as well as the mechanics of producing words. This discipline also encompasses feeding and swallowing issues. There is occupational therapy for helping with day-to-day living activities, often for fine motor skills like picking things up, for example. There is physical therapy, whether it's developing muscle tone or helping to gain mobility. There is developmental therapy, which focuses on such abilities as communicating and learning. There is the need for assistive equipment such as wheelchairs, walkers, speech devices and more. There is behavioral therapy, largely for emotional disabilities, which focuses on such areas as coping with day-to-day stressors, resolving conflict, social skills, poor motivation and more.
COMMON CHALLENGES
No matter what the special need or therapies required, they all change over the course of time, picking up different challenges along the way both for child and parents.
There are financial challenges that cross all categories, like insurance companies that put the child with cerebral palsy in the same category as the average child who breaks a leg-topping out coverage at ten sessions.
Nancy Winiecki, manager of pediatric rehabilitation services at St. Margaret Mercy Healthcare Centers, tries to help parents through the financial and insurance brick walls by providing detailed at-home programs, designing her treatment plan in such a way that compensates for the fact that the child will be getting fewer visits than are optimal. She might recommend a certain gymnastics or dance program for example, or spread out visits over a longer time period.
There's the shortage of caregivers, notably in speech therapy, as many pointed out, and high turnover rate of other types of providers.
There's the sheer magnitude of wrapping your head around the diagnosis and the monumental task of learning how to be an effective advocate for your child in a myriad of resources that are available but sometimes invisible or inaccessible because of an extremely hard-to-navigate governmental system.
There are acceptance and awareness issues, such as parents shushing the curiosity of toddlers who want to know about that child on wheels at the park, or kids with behavioral disabilities being labeled as "bad kids."
Dr. Denise Domazet, clinical supervisor at Southlake Center for Mental Health, points out that too often, kids that have behavioral problems are labeled as "bad," and Mom and Dad's parenting skills are mistakenly called into question. "There's also a sense of placing blame on the person," she says. "Nobody's ever blamed for their cerebral palsy, but a child is blamed because they are acting out in school. There is that stigma of being a behavior disorder child."
TOUGH TRANSITIONS
Perhaps one of the most pronounced challenges parents face is transitioning through the stages age-wise.
First steps
There's no doubt early intervention is vitally important when it comes to a child's special need. That's where First Steps comes in, a federal program that provides services to children aged 0 to 3. As the website states, "First Steps is a family-centered, community based, coordinated system, which provides early intervention services to children birth to three years of age living in Indiana, who have developmental delays or are developmentally at risk."
Anyone can refer a child to First Steps, which will conduct an evaluation, determine eligibility and then coordinate the necessary services or therapies with all necessary agencies.
Transition into school
Once children turn three, the therapies they had been receiving through First Steps end, and they transition to their respective school systems. Those who qualify for services develop an individual education plan (IEP) and services are decided with a team approach.
According to Griffith mom Marie Simmons, whose 17- and 11-year-old boys have cerebral palsy, the school system is educationally based, while family-oriented First Steps is developmentally and medically based. This naturally results in some needs not being met as readily as before. Filling in those gaps is something the parents, and their insurance plans, must navigate solo.
Having been around the block, so to speak, Simmons has a realistic view. She acknowledges the parent frustration, while accepting the natural limitations of things. She says many parents mistakenly believe the school will automatically pick up where First Steps left off, but this is not the case. "The school is there to get them the educational program. All your school services have to relate to your educational goal," Simmons says. "Again, not just whatever the mom comes in and says she wants, but what the team decides. That can be hard. Everybody wants the best for their child but the school doesn't have to provide the best thing for your child."
Regardless of good intentions, parents still feel the strain. Frigo says, "The school system only has the capability to pick up about 30 to 35 percent of those children, which means 65 to 70 percent of those kids that got three therapies last week, when they turn 3 years old, they get nothing and that is devastating for a mom because you are telling her at 3 years old that's as good as he's going to get, which isn't true, but the school system is only allowed to focus on educational needs."
This is one challenge that prompted Frigo to found her own pediatric rehabilitation center, named for her son Jacob, who has Down syndrome. She founded Jacob's Ladder as a nonprofit organization to help shoulder the financial burden.
An occupational therapist by trade, Frigo knew this just couldn't be it for Jacob, who wasn't at a level considered low enough to continue getting services, although she knew he had more potential. Living in Portage, the only choices she had were to take her son to Merrillville or Michigan City to continue therapy. Since so many therapists are busy with First Steps, they are less available for those seeking services privately.
Transition into adulthood and Medicaid waivers
Even more weighty is the topic of long-term planning and the tough transition into adulthood.
Simmons sighs heavily at the enormity of what she will face. "Do we really have to talk about that?" she says with a quiver in her voice. "Oh, my gosh. I know. I'm very worried about that."
She worries, because at age 18, her children will "age out" of therapy and medical care. She worries about what will happen to them if something were to happen to her. Fortunately, she has what's known as a Medicaid waiver, through the Bureau of Developmental Disabilities Services. For those who qualify, respite and caregiver help in the home, day programs and living arrangements can be provided, though exclusively available in many cases only through the waiver and not available by private pay.
Pamela Williams, transition services coordinator at Arc Bridges, works primarily with high school students and their parents to determine what the plans are after that 18th birthday. "That is the question probably that I hear more than anything," Williams says. "What am I going to do when my child is done with school?"
Unfortunately, this is a bad time to be asking about this, because there is currently about a 10-year waiting list for the waiver. In order to prevent being locked out of services later, this must be done in early childhood or as soon as the diagnosis is made, Williams says. If, 10 years later, the services aren't needed, that's great. Fortunately, Williams says there is also a priority waiver for those aged 18 to 24 which can sort of work like a Band-Aid.
The bottom line is there never seem to be enough services and funding to go around, evidence of how prevalent individuals with special needs are. "My heart bleeds for the people who are right on the line," Williams says.
Susan Wojnarowicz, president of the Down Syndrome Association of Northwest Indiana, has a Medicaid waiver for her 29-year-old daughter Shannon. Still, there are times she is sitting at home, waiting for services, because she would often get pushed to the end of the line when someone with more urgent needs came along. "There is a big gap in Indiana right now for support services," says Wojnarowicz, who gets ten respite hours a month.
Bureau of Developmental Disabilities Services
219.887.0503
Contact this agency to apply for a Medicaid waiver for services that may be needed in adulthood such as living arrangements, respite or caregiver help in the home. Experts say the waiting list for services is about 10 years long, so they advise applying for this in early childhood or as soon as you receive any diagnosis that will likely still require special help in adulthood. It's better to apply early and then not need the services, than to be locked out of them.
NWI Parent talks to . . .
Marianne Sannito, of Highland
Her sons:
Nathan, 4, has semantic-pragmatic disorder. This is a developmental disorder in which the child has trouble understanding the meaning of what is being said and using language appropriately in social situations. It is believed to be closely related to autism and Asperger's syndrome.
Nolan, 1, has laryngomalacia, a congenital abnormality in the throat in which the cartilage of the larynx collapses during inhalation. This causes partial airway obstruction, resulting in a high-pitched noise during breathing and difficulty eating and drinking.
About their special needs:
Nathan sometimes has difficulty being in social situations and participating in conversations. "He sometimes just can't come up with the words to answer questions. He just kind of freezes up in a way," Sannito explains. ". . . Sometimes he'll just start talking and it doesn't coincide with the conversation." Nathan also had some sensory issues, which are almost nearly resolved now. For example, he wouldn't tolerate a haircut or having toenails trimmed or tags touching him, and would only eat smooth foods. He played with cars but never used them in a pretend scenario. (For more about sensory issues, see "Sensory Processing Disorder Revealed" in Tot Spot.)
In infancy, Nolan had trouble turning his head and it was cocked to one side. His trunk lacked tone and he was often limp. He later had a hard time walking, because his balance was off. Though he had surgery days after birth to reduce the size of the flap blocking his airway, he still experienced breathing, eating and drinking difficulties.
The help they are getting:
The Sannitos are fortunate from an insurance/financial standpoint. Both boys are getting various therapies from the pediatric rehabilitation program at St. Margaret Mercy Healthcare Center. Even though Nathan has aged out of the First Steps program, which serves kids ages 0 to 3, insurance is there to fill the continued need, topping out at 45 visits per year for each boy, adequate for their needs.
Nathan needed developmental therapy, speech therapy and occupational therapy. He is currently only getting speech therapy. He often received therapies in a pool to help with his sensory issues.
Nolan needs speech therapy, but no longer needs physical therapy. He often received therapy in the pool to better strengthen his core muscles. He must have a thickener put into any fluid he drinks to avoid aspirating it into his lungs.
Challenges:
Sannito has experienced firsthand the shortage of speech therapists in the area, having put her boys on many waiting lists and waiting six to eight months.
Worries:
Sannito sometimes worries about how her boys will fare socially. She is concerned other kids won't see past Nathan's speech patterns and Nolan's noisy breathing and hemangioma, a type of benign tumor, on his nose.
NWI Parent talks to . . .
Marie Simmons, of Griffith
Her sons:
Alexander, 17, and Justin, 11, both have cerebral palsy, caused by a rare genetic disorder known as X-linked congenital hydrocephalus with MASA syndrome.
About their special needs:
Considered multiply disabled, the boys have medical needs (their hydrocephalus requires yearly monitoring), physical needs (they use a wheelchair and speech devices) and developmental (they require some extra help learning in school).
The help they are getting:
Both boys currently receive physical therapy twice a week and occupational therapy once a week at the pediatric rehabilitation program at St. Margaret Mercy Healthcare Center. Simmons' goals are to continue to improve their physical functioning so they can stay as independent as possible. At school, a team works together to provide for their educational needs through an individual education plan (IEP).
Worries:
Simmons is concerned about the changes that she is faced with when her children turn 18. At that point, they will age out of therapy and medical care. She worries about what will happen to them if something were to happen to her.
What she wants others to know:
Especially with kids, Simmons says don't perpetuate an attitude of avoidance when it comes to people with disabilities. If you don't know if the person can understand and speak, always err on the side of speaking directly to them first. Also, don't shelter kids and shy away from a person using a wheelchair, for example, when they ask questions. "It's okay to be friends with somebody [using] a wheelchair," she says. "I've never been upset by a small child asking a question. It's more upsetting to us when the parent pulls them away."
SUPPORT AND SENSITIVITY
It can be hard to know how to respond properly to a family member or a friend who has a child diagnosed with a disability. What are the right words to use, and what are the words to never say? It can be hard to know, but sensitivity is always key. Toni Modglin is a parent of two children, Damon, 11, and Chase, 7, who was diagnosed with autism in the fall of 2004. She is also a parent liaison with About Special Kids, a family-to-family information network. Modglin offers some tips for being the best support to those we love.
"Please do not tell me how sorry you are. I might be feeling sorry enough for myself. Or, I might not see a need to feel sorry for my child being who he is, so I might be offended that you do. If my child is diagnosed at birth, celebrate her birth just like you would any other child's. Help me see the positives in our future," Modglin says. "Remove the 'R-word' from your vocabulary immediately! Words hurt and sting. Our society uses the words 'retard' or 'retarded' as slang. When you hear that word coming from the mouth of a doctor to describe your child, it is no longer slang. It is reality."
Modglin adds, "Be available to talk, even if you do not know what to say. Offer to watch my other children when I have to take my child to a therapy session. Take the time to learn about my child's diagnosis. If you have children yourself, talk to them about disabilities and encourage them to still play with my child. Acknowledge my child. If you would normally speak directly to a child her age, speak directly to her. Do not ask me if she likes ice cream if she is right next to me. Even if she cannot answer for herself, I appreciate that you gave her the chance. Do not trivialize our experience or hope for unrealistic cures."
To be supportive, Modglin suggests, "Offer to come with me to appointments. It always helps to have a second set of ears and emotional support if I need it. Do not compare my child with yours. As a community member, when you see me in the grocery store and my son is in the middle of a meltdown, please do not stare, but instead offer to help me. Finally, if you are unsure what to do, ask. Anything you want to know about how to help me or my child, ask and I will be happy to tell you."
NOW WHAT?
When your child is first diagnosed with a disability, it is hard to know where to turn, for support, for help, for answers. Michelle Higel, BSW, social worker at the Center for Possibilities in Hobart, suggests first, taking care of yourself, then allowing others to help, all the while loving your child.
She says there are books that can help give parents the right kind of information. "Read all you can about your child's diagnosis and books written by parents celebrating the joy they have experienced raising a child with special needs. Such books are Special Children, Challenged Parents by Robert A. Naseef, Ph.D.; Miracle Birth Stories of Very Premature Babies by Timothy Smith; and You Will Dream New Dreams by Stanley D. Klein, Ph.D. and Kim Schive," Higel says.
And when it is time to seek assistance, there are many organizations and agencies in Northwest Indiana that offer specialized services. For our comprehensive Northwest Indiana Special Needs resource guide, please visit nwi.com/parent.
